Everyone has a hero.  Everyone has someone they look up to, someone they wish they could be like, someone they could just meet.

Who are my heroes?

When it comes to me, I’ve had a few…

Back in 1990 I watched the film Mermaids for the first time and within ten minutes I wanted Winona Ryder to be my big sister.  In 1995 Natalie Portman won an award for best performance by a young actress in the film Leon, I not only wanted to wear the clothes she was wearing as she stepped on stage to collect the award, but at the age of fourteen I wanted to be her best friend and be her at the same time.

Winona Ryder – Mermaids

In 1993 I saw Cool Runnings at the cinema and came out wanting to be a bobsledder.  I even went home and asked my mum to hard boil be an egg so I could have a lucky egg just like Sanka!  The minute I clapped my starstruck eyes on old re-runs of the 1982 TV series Fame, my imagination had already enrolled itself in the 7th series that never happened.

I wanted Meat Loaf to be my dad, I wanted to be Enid Blyton’s protégé, be best friends with Zach and Kelly from Saved by the Bell and have my first and second novel published by the time I left high school.  I wanted to be a ballet dancer and convinced myself if I pranced around my bedroom floor on my tip toes enough, I could give Darcey Bussell a run for her money.

Sylvester Stallone – the uncle

My first celebrity crush was Sylvester Stallone when I saw him in Rocky III and I was devastated that it was filmed in 1982 which meant he was far too old for me and would be more suited to the role of favourite uncle, which would have made things even weirder!

When I was picking out careers for myself my maths teacher pointed out that I wasn’t clever enough to be a psychiatrist.  I then turned my attention to becoming a psychologist; but shortly after I changed my mind and settled on becoming a podiatrist because by this point I was fully emersed into the world of Indie music and I had a crush on just about every singer in every band that I was obsessed with. 

I told myself I could be a “foot doctor” to the stars.  Whenever I watched Top of the Pops, Glastonbury, Leeds and Reading Festival, any kind of concert where my favourite bands would play, I always thought…

“Their poor feet, they must really hurt doing all that standing and dancing.”

I was absolutely sure that I could help them and get closer to them by becoming an employee.  If I was their “on the road” foot doctor, I could surely make them fall in love with me.

First it was Crispian Mills, obviously, and I didn’t care that he was ten years older and when anyone said…

“What would a twenty-four-year-old want with a fourteen-year-old?”

I didn’t care, I was convinced he would one day float into my GCSE maths class and say…

“Put your calculator down darlin’, you’re coming with me.”

When I discovered he was married I knew the Crispian Mills ship had sailed and my ears turned their attention to Ocean Colour Scene.  I would religiously watch TFI Friday just so I could hear the first few beats of The River Boat Song.  When one of my school bullies informed me that thirty-one-year-old Simon Fowler would most definitely not be interested in fifteen-year-old me, I said…

“Give me one good reason why not!”

He replied with…

“He’s got a boyfriend, you minger.”

Now mark my words, I was less bothered by the “minger” bit than I was about the boyfriend bit, because now I knew it wasn’t possible and now I had no-where to go. 

Then I saw a music video by The Montrose Avenue and told myself that if couldn’t cut Crispian Mills’s toenails or file the dead skin off Simon Fowler’s heels, then surely Scott James would let me check out his bunions, assuming he had any.

When my friends were fawning over Peter Andre and Deiter Brummer and trying to work out how they could go and see Titanic for the sixth time, I was looking out for the next band who might need their feet fixing.  It turns out I had a list…

Puressence

Mansun

The Seahorses

Dodgy

Starsailor

Ruth

Train – this would have been tricky since they were American.

Stereophonics

James

Gay Dad

Head Swim

I have often said that I live my life through music, because as a teenager music and my writing was all I had as an escape.  I could create any world I wanted and it didn’t have to be accurate because it was fiction.  I could invent good people and turn them bad, I could make my characters swear and it didn’t matter what they said or what they did because they weren’t real and that wasn’t their fault.  I could make them out to be as rude and as nasty as my school bullies because within those pages I could flick off the switch of whatever was happening in my real world and get some peace.

The archive…

Every Sunday I would finish off my homework while I listened to the Top 40 and pray my favourite bands were still hanging in there.  Whenever they released a new song or a new album I had already pre-ordered my copy at my favourite music shop in Bolton and on release day I would dart down to to X-Records to pick up my cassette (Does anybody remember cassettes?).  As soon as I got home I would gently unfold the leaflet to see if the lyrics were written inside.  Regardless of the case’s contents I would sit beside my cassette recorder with my ear as close as I could get it to the speaker and learn every single word my heroes were singing.

I would memorise those words and I would find a way of relating to whatever they were singing.  I looked for meaning in every lyric, every hum and every musical note that came from their instruments.

I wrote my stories, my novels, my plays and my screenplays to my favourite songs and I would pick out music by artists who had the same feeling in their songs that I was trying to convey in my writing.  I even wrote letters to some of those bands explaining that I was a writer and I wanted to use their songs in the films that were going to be made from my stories.  I never got a reply, although Mansun did send me two backstage passes for a concert I didn’t have a ticket to because it was in Coventry.

I think I was about twenty-six when I thought my musical friends were talking to me through their lyrics… and we can thank Bernard the Bipolar brain for that.

Bipolar Disorder has a nasty habit of taking the most innocent and peaceful thing in your life and turn it into wrecking ball.  When you’re in the throws of an episode it’s very difficult to decipher between reality and the fictional world your illness creates.

I have a recurring theme of wanting to make a difference in the world.  I want to improve it, help it, just save it!  In 2011 I thought this was my dream, in reality it was massive Bipolar episode that landed me in a psychiatric ward for nearly two months.

Since then, every episode and every blip has been the same…

Bipolar – musician – lyrics – meaning = save the world.

I write my blogs like I’m an expert and I stand in front of groups of people and I talk the talk about how I manage my condition and how I recognise my symptoms so I can put a stop sign in front of it before it even reaches the traffic lights, but the truth is, sometimes I miss the symptoms.  Sometimes they just show up unannounced and it feels like they’re supposed to be there.  Sometimes something unpleasant makes an appearance that you never expected and despite saying…

“I’m not giving it anymore airtime, it’s done.”

…it doesn’t work. 

I always say the human brain is the most powerful muscle in the body.  It tells everything else what to do, how to work and it tells us how to feel, what to think and how to act on what we think.  I have tried to train my brain using the concept of…

“Mind over matter.”

…but most of the time I feel I am unsuccessful because Bernard is in charge of that department.  I am a pro at burying the things I don’t want to think about, and Bernard is a pro at disguising the things I don’t want to think about by bringing them out through music.

In my teenage years I bought every single and every album my idols ever released and every year my mum would ask me…

“What do you want for your birthday?”

In 1998 I said…

“The Hatful of Rain album by Del Amitri.”

Hatful of Rain 1998

I’d heard one song on the radio, “Always the Last to Know” and saw them perform “Don’t Come Home Too Soon” on TFI Friday and I was already in love with Justin Currie and wanted to run off into the sunset with him. 

Justin Currie and co – when’s the next sunset?!

About ten years ago I went to see Del Amitri play in Manchester, it was on my bucket list!  I remember they hadn’t sold out so we got moved to closer seats, and I remember thinking they sounded just as good live as they did on cassette when I was sixteen.  I also remember Justin Currie said a lot of naughty words that didn’t match up to the love and adoration of the lyrics in his songs.

Twenty-six years later I still have a copy of that album and the other week I was having a little ole’ listen to it when Bernard latched on to “Kiss This Thing Goodbye”.  Before I knew it I had downloaded every album, every single, every EP, music video, collaboration song and live album from Apple Music.  I created four playlists for them on my iPod, a full list, short list, mini list and a list of their music videos.  I also trawled through YouTube and created a playlist of videos from the 90’s because at this point I believed Justin Currie had started talking to me through his songs, but I had to watch the videos and listen to the songs continuously to find out what he was trying to tell me.

It got to a point where I was still awake at 2am talking to a 1990’s Justin through my Amazon tablet saying…

“What are you trying to tell me?  Just say it.  What are you trying to tell me?”

…and even though part of my brain knew this was not healthy, Bernard’s part of my brain convinced me that this was fine.  Every second of the day, where possible, was spent listening to Del Amitri.  It was a comfort, but it was also stressful.  Most people would offer simple advice like…

“Well just don’t listen to it.  Distract yourself, listen to something else.”

But I cannot stress enough the effect Bipolar has on the human brain.  I knew something was wrong, but the more time that passes, the more powerful those warped ways of thinking become.  It becomes dangerous to not be able to listen to something when your brain is telling you it’s keeping you safe. 

When you don’t need to eat and you don’t need to sleep because you haven’t got time, and you just need to focus on what Del Amitri are singing about in a YouTube video from 1990!  It is impossible to rationalise your thought processes when fiction makes more sense than reality… because this fiction is your reality.

When you’re on the phone to your psychiatrist repeatedly saying…

“I’m getting messages from music again, it’s back and it keeps coming back.  It always comes back.  Is there any chance that this is real?  Is it real?”

And he says…

“It’s unlikely.”

…and he prescribes you some temporary medication to help turn that reality back into fiction, it leaves you with the feeling of standing in a gust of wind in the middle of a desert.  You can feel the sand scratching at your face and all you can do is wait for the wind to die down so you can open your eyes to look at the wreckage Bernard has left behind.

A sand storm

My biggest fear was that I would never be able to listen to Del Amitri again.  I was worried my connection to their songs would be tainted by the stress I’ve been putting on their lyrics to find a deeper meaning to this world’s never-ending crisis.

Part of me dreaded the possibility that I might still be getting messages from them, but rest assured, about an hour ago I looked at my YouTube playlist and where I’d initially thought that Justin Currie was talking to me through the song “Surface of the Moon” he turned to the crowd to introduce the song and he said…

“This is a song about Glasgow.”

Well…not even Bernard can argue with that.

When I was younger I would dream of meeting my heroes.  I would imagine the kinds of conversations I would have with Winona Ryder and how she would give me advice about boys and loan me her clothes.  I dreamt of the day Crispian Mills would rescue me from the lessons I hated at school and everyday I waited by my front door for a letter from a band saying…

“Of course you can use our song for your film! We’ll see you on the red carpet.”

Fan mail

This miniature episode will come as a surprise to most people.  I am a pro at looking “normal”.  I am a master of deception and apparently I make it look easy.  But trust me, this is not easy and I don’t enjoy a single part of it.  I view Bipolar Disorder as an equivalent to some kind of devil.  It sits in a corner with a grimace on its face, rubbing it’s grubby little hands together ready to wreak havoc in all directions and senses of the word. 

My obsession with music is my comfort blanket.  It’s anything from Kula Shaker to country music and this time Del Amitri.  It’s impossible to describe the disappointment you feel when you realise something you wanted so badly isn’t real.  When you realise you don’t have a special power and a band singing a song is really just a band singing a song, it empties your world a little. 

I know artists write songs to share their life stories and as listeners we can relate to their words.  We can all take something from a song.  It doesn’t have to be a ground-breaking solution to saving the world because sometimes it’s just simply about the place you grew up in.

I’m not sure I’d ever want Justin Currie to see this… but if he was to stumble across it while randomly searching for a blog to read on a wet weekend with a cup of tea in his hand, then I’d like to say…

“Hello friend,

Thank you for writing songs that became the anthems of my childhood. 

Thank you for making me laugh through the humiliation of talking to a boy I liked only to realise everyone in my year group knew he had a girlfriend and I was “Always the Last to Know”.

When I finished my exams and handed in my assignments I would turn on my heel like little miss sassy pants and sing “Kiss This Thing Goodbye!

Thanks so much for giving me a song to sing to at university.  While everyone was glugging Lambrini I sipped diet coke and whispered the words to “Stone Cold Sober”.

And honestly!  You will never know the difference you have made over the last few weeks.  While I’ve been putting my brave pants on every single day, I have felt about as successful as “Spit in the Rain.

So thank you, for being the hero in the battle between…

…the Devil and Del Amitri…

Share:
Reading time: 14 min

When you have an illness, of any kind; it can be a lonely and isolating world.  You’re trapped inside your body and your mind and there’s very little you can do to separate yourself from that.

When you have an illness you’re reminded every time you look into the mirror that there’s something wrong with you.

When you have a mental illness, every time you look into the mirror it’s an introduction to how you’re doing that day.

It’s been ten years since I made the decision to try my hand at public speaking.  In 2014 I couldn’t even read a menu out loud never mind stand up in front of a group of people and talk about my mental health journey. 

Most people I talk to say the thought of public speaking terrifies them, and once upon a time, I would have agreed with them.

Over the years people have asked me…

“…Why? Why would you do such a scary thing to yourself…by choice?!”

My answer is simple…

“Why not?”

When I’m asked why I wanted to become a public speaker, I don’t struggle to find my words.

I got tired of people saying “no” to the things I wanted to do.  I got bored of medical professionals putting the mentally ill into a box and saying…

“This person can’t do this because they’re mentally ill.”

I got frustrated with the world for allowing people to perceive the “mentally ill” as a group of people who can’t function in a society that is far from functional in the first place!

My life today is very simple.  I have not travelled the whole of the world, I have not experienced a tornado of heartache and heartbreak and throughout my 20’s and 30’s I was never ambitious when it came to my working life.  Some say I settled for a basic way of living and I probably did.  But what I would say about that is…

“At least I’m alive.”

A friend once said I should aim higher and look for a proper career.  They said…

“If someone asks you where you see yourself in five years, what would you say?”

I said…

“Alive, hopefully.”

I don’t measure success according to the five, ten, fifteen year plan others set for themselves.  I try to be grateful for what I have and if I am happy with the things that come my way, then I count that as a success.

When I started public speaking I didn’t really know where I wanted to take it or how far I could go with it.  When people ask me what I talk about and my answer is “myself” I always answer with caution because all I can see in their eyes is them thinking…

“What could you possibly have to say about yourself that anyone would want to listen to?”

Well, as it turns out, I have quite a bit to say and people seem to want to listen to it.

Before Covid I was doing multiple talks per month but after lockdown everything didn’t just slow, it came to a halt altogether.  I went from one job where people knew I had a public speaking side show, to a job where no one knew anything about me and any mention of public speaking was most probably seen as either a lie, or not worth registering because there was no current proof. 

Well now there’s proof.  This year I have gone from doing three talks in four years to three talks in one month; and it feels good to be back on that horse.

Every year since 2019 Abertay University have asked me to speak to some of their students. During Covid I spoke over MSTeams, which if you’ve used it, you’ll know it’s a better version of Zoom but still problematic.  Last year the doors of in-person speaking reopened and I had the chance to go up to Dundee again, stay in a hotel and have a little adventure.

I had three rules!  My rules were as follows…

  1. Do not get an ear infection.
  2. Do not get fibre induced acne on face.
  3. Do not have Colitis flare up.

What happened?  I hear you ask…

All flippin three! Every single one of them!  I managed to curb the ear infection and found an anti-biotic spray I’d kept since my last one, so that was that taken care of.

I imagine you’re wondering what fibre induced acne might be.  Well, I can’t digest anything with fibre in it, which is basically anything healthy.  So what did I eat prior to going to Dundee?  A lot of fibre, which then causes my face to break out into a collection of volcanoes that take days to fully erupt and weeks to clear.  I got three of them on my face!

To complete the triangle, of course my colon decided it wanted to shed the insides of itself and have me writhing in agony the night before I left for Dundee, and skating on the edge of a cliff with no toilet insight.  And trust me, when you have no working muscles to hold in the delights of a stagnant organ that never worked in the first place, needing to go to the toilet is the last thing you want to be thinking about.

Picture this… I’d paid for a first class train ticket and as I was feeling like a tired and deflated whoopie cushion, I was beyond relieved to discover I could sit next to a toilet.  That is until they cancelled the train and we were stranded at Preston to then be ushered in to a strange taxi that would take a couple of us to Glasgow.  I was fine.  I was absolutely fine… until I needed the toilet. 

I have never used Tena Lady, but at that moment I would have snatched an old lady’s hand off just for the protection.

I remember finally arriving in Dundee and waiting for my hotel room to be ready and I sat looking out at the busy streets thinking…

“I’m not having a nice time.  I’m not, I’m not having a nice time.”

Sad penguins, not having a nice time…

Rest assured, after that things did get better, and I managed to get the rest I needed before I stood in front of fifty+ people and told them a story I wasn’t sure even I wanted to listen to, never mind tell.

Fast forward a year and I received an email from the course tutor at Abertay University asking me if I would speak for a fifth time.  My immediate response was yes, obviously, but then I thought…

“Are they not bored of hearing the same story by now?”

For some reason negativity is drilled into human nature, particularly me.  Whenever something good happens I don’t just accept it and be grateful for it, I have to find something to counteract that euphoric feeling and question my right to happiness.

When you’ve had people in the past who have said…

“Why you? What makes you so special? I could do that; anyone could do that.  What do people want you for?”

It hurts, and hurt is hard to shake off when it’s easier to add fuel to the feeling of inadequacy.

It’s funny though, I never say no to a speaking opportunity; even with the memory of being stuck in a taxi for four hours with an impending explosion of brain matter that could rival the stench of a million babies nappies in a confined space, still at the forefront of my mind; I did get quite excited about going to Dundee again.

I had three rules!  My rules were as follows…

  1. Do not get an ear infection.
  2. Do not get fibre induced acne on face.
  3. Do not have a Colitis flare up.

What happened? I hear you ask…

Nothing.  Absolutely nothing.  I had no ear infection.  I haven’t eaten anything fibrous in about three months so my face is clear; and my colon has decided to take a break from torturing me – although I did look into the possibility of grabbing a pack of Tena Lady, just in case.

When I arrived in Dundee I had most of the afternoon and the evening to occupy myself.  The very nice man on the reception desk asked me where I’d travelled from and what I was doing and then said…

“Oh you’re here for the uni.  Are you a teacher or a professor?”

I laughed, I did, I laughed and I said…

“No but I’m doing a talk.”

“What are you talking about?”

“Mental health.” 

“So you’re teaching something then, let’s see if I can find you a nice room.”

He wasn’t kidding.  I went up to my room and opened the curtains to see the Dundee skyline and the soft waves of the sea.  That evening I pulled the armchair in the corner of the room to the window and watched the faraway lights twinkle and I thought…

“After last year, I deserve this.”

A room with a view…

The next day when I stood in front of the 45+ people doing their final year of their counselling masters degree, I thought,

“I must be doing something right.”

When they nodded their heads, when they laughed, when they looked sad or disappointed, thought,

“I must be saying something right.”

When they gave me the applause I always shy away from I thought,

“I must have done something right.”

When the class ended a few of the students queued to talk to me, to hug me and say thank you, I admit part of me was still reluctant to accept their kindness and their emotional generosity. 

Death by hot chocolate…

That afternoon as I killed time until my I had to catch my train home, I found a pancake house and had the biggest, most calorie filled, fattiest hot chocolate I could find and I thought…

Isn’t this what I wanted?  Isn’t this what I set out to do?  When I took the steps to become a public speaker, isn’t everything I have achieved over the last ten years exactly what I wanted to achieve.

I wanted to make an impact.  I wanted to prove a point.  My point being, that I could achieve something if I put my mind to it. 

As I write, this I still hear that negative voice inside my head saying…

“People will think you’re full of yourself.  They’ll think you shouldn’t be given these opportunities.  There’s someone out there who is better than you.”

And maybe that’s true.  But I don’t give into my ailments just because something uncomfortable has the potential to happen, so I won’t give up on trying to better myself because something inside me says I might not be good enough. 

The truth is, will any of us be good enough for ourselves?

Over the last few days, maybe even just the last few hours; I have learned that the only thing that really holds me back in life is myself.   It’s me who tells me I am not good enough so it’s me who is responsible for my actions.

My kind of sunset…

The morning of my talk in Dundee I sat in my hotel window with a cup tea and I looked out at the red and orange sky as it reflected off the water.  All I could hear were my slurps, but knowing how hard I have worked to get to where I am in life, despite everything that has been against me, I couldn’t help but think, I can’t teach anyone anything…

…but I can tell a story.

Share:
Reading time: 10 min
headphones and iphone

Exactly three years ago in 2020 I was obsessed with Panic! At the Disco.  I was convinced Brendon Urie was communicating with me through the lyrics in his songs. Every single song had a personal meaning meant for me and together we would conquer the fate of the universe.  Only trouble was, it wasn’t real … I was having a Bipolar episode.

See that’s the trouble with Bipolar, it’s a tricky little customer.  It disguises itself as something enjoyable, something innocent and ten out of ten times the onset of mine is a fascination with music. 

It starts off as a song, and in 2020 it was…

“High Hopes”

…I looked on iTunes and over the course of two months I downloaded every song, every album, every collaboration Brendon Urie had ever done on to my iPod and listened to Panic! at the Disco and Panic! at the Disco only.  I’m serious, every bus journey, train journey, lunch break; even the working day was consumed by Brendon Urie’s voice and his disjointed lyrics that I made sense of in my head to suit my purpose…my mission.

Panic at the Disco release gravity defying video for 'High Hopes' |  OUTInPerth | LGBTQIA+ News and Culture

I know it sounds crazy.  I know it’s impossible to comprehend and I’m not sure I can even explain it; but this isn’t the first time and it certainly wasn’t the last.

I have always been addicted to music.  When I write stories I have music in my ears that helps me to set the scene and create the personalities and sometimes the appearances of my characters.  When I was at school I would sit in my bedroom and listen to the Top 40 just waiting for a song by Ocean Colour Scene or Kula Shaker to place.  I went to sleep listening to Meat Loaf through my headphones and in PE I would internally sing the words to…

“Two Out of Three Ain’t Bad”

…to help get me through the bleep test (remember those?).

Music has always been there, it’s something constant, something dependable that never failed to pull me out of the holes I was sucked into. 

When I was bullied I’d close my eyes and picture Crispian Mills knocking on the door of my house and saying to parents…

“I’ve come for your daughter and I’m going to take her away and make life wonderful.”

When I listened to Simon Fowler sing…

“The Riverboat Song”

…I wasn’t the spotty swot people picked last for their hockey team.  I was clever and popular with perfect skin.

The music I listened to made me feel everything I wanted to be and as a result played into the hands of Bernard the Bipolar brain.

When I was fifteen my GCSE English teacher gave the class a piece of homework.  He said…

“I want you all to go home tonight and pick a song, look at the lyrics and tomorrow I want you tell the rest of the class what they mean.”

…Well I had a whole cheerleading squad in my head shaking their pom poms because this! This was my idea of homework.  I didn’t care about Shakespeare, MacBeth was grim and as for The Lord of the Flies, well, William Golding badly needed to up his game if he was going to compete with my entire cassette tape collection of Indie and Rock music!

Meat Loaf Music Cassettes for sale | eBay

I must have sat with my Walkman for hours, listening to every Meat Loaf song word for word, writing down the lyrics, reading them, thinking about them and pondering what they meant.  In the end I couldn’t choose just one song, so the next day I went to my English lesson which of course was the last lesson of the day; the only lesson I’d been looking forward to all day!  I sat in my seat next to my friend with three A4 pages completely covered in Meat Loaf Lyrics. 

I was ready!

But the rest of the class were not so ready.  It turned out there was only a handful of us who had done our homework.  Not only that but I happened to be the only kid in the class who had more than just one lyric going spare.

“Katerini, how many songs have you got?”

“Give us a song Kat, you’ve got loads there.”

“Kat, can I have one of your songs?”

Out of the kindness of my heart and probably revelling in my sudden albeit temporary popularity, I ended up dishing out five or six of my songs thinking…

“It doesn’t matter, I’ll definitely get asked for a one.”

…purposely I saved the best one for myself because I’d had every single word under the microscope the night before and by now I was…

A musical genius.

….so there I sat, all smug and excited; pleased with myself that not only had I done my homework to the best of my ability, but as my teacher asked everyone in the class I’d donated a song to, to then dissect their chosen lyric, I very quickly realised that I had done everyone else’s homework to the best of my ability too.

I have never forgotten my disappointment.  The disappointment that no one in the class said…

“Actually Sir, this is Katerini’s work.  I didn’t do my homework so I stole part of hers.”

I was disappointed that I didn’t get picked, again, only this time instead of being on a hockey field, it was in a field where I saw myself as an expert. 

Back in 1998 I could not have foreseen my Bipolar diagnosis and I would never have imagined that the one thing I’d always loved and believed kept me safe, would sometimes play out to my detriment.

Sometimes the noise of my own thoughts is too loud to bear so I put my headphones on and drown out the chaos with the voices of…

Four Norwegian singers (Kurt Nilsen, Espen Lind, Alejandro Fuentes, Askil Holm) who I later imagined were talking to me through their live albums…

“Hallelujah Vol 1” and “Hallelujah Vol2”

…together the five of us were going to save the world.

I would listen to the same song constantly, memorising the lyrics, writing them down, translating them into meaning that was only visible to me.

I wrote stories where Alex Band (The Calling) was the definition of my lead character and his music was the soundtrack to the plot.

In my late teens and early twenties Puressence was the cure to my depression.  When I closed my eyes and listened to…

“Standing in Your Shadow”

…I would feel less invisible.

At that age of twenty-two I had a second try at the third year of my degree and I stayed up until four in the morning putting songs on a tape that I would listen to while I tried my best to write an essay.

At seventeen Buffalo Tom were the only band I listened to for a month because I only knew one other person who knew who they were.

In 2014 I hugged every single member of The Overtones after their concert and they had no idea who much that meant because I was in a really dark place and their smiles made my cold heart feel warm again.

“Seahorse Perfect”

…by Astrid – a band I’d loved in my sixth form days and became part of the soundtrack to my first year at university made sense of the grief I had for a friend I’d lost.

City and Colour were my go-to in days of confusion because Dallas Green’s voice was like a whisper of comfort over a bed of rain filled clouds.

I have a rational reason for every single musical obsession I have ever had…

…until now.

About four years ago Luke Bryan popped up on my YouTube feed with his song…

Luke Bryan sings 'Drink a Beer' with two fans at Hartford concert

“Crash My Party”

…a few days later I downloaded every single song, album and music video he had ever done on to my iPod and I created a playlist that I added to and amended and over the course of two months I didn’t listen to anything other than Luke Bryan.

I’ve never been a big fan of country music, in all honesty it irritated me.  All that talk of dirt, whiskey and riding bulls called Fumanchu, I didn’t get it.  I couldn’t relate to it and I’ve never liked the look of cowboy boots; they’re really not my style.  But I have to admit, country music itself, it’s actually a grower and Luke Bryan became my guilty pleasure.

In January I bought a digital radio and stumbled on Smooth Country.  Well that was it, it was like a switch!

Ping!

My little office at work was filled with an array of joy and misery combined.  My world was consumed by husky male country voices all singing about Whiskey and God and ploughing fields of corn; and suddenly it wasn’t annoying.  Suddenly country music was the best thing I had ever heard…

…and then it became the slippery slope of a musical Bipolar decline.

I fell in love with the voices of…

Florida Georgia Line

Chris Stapleton

Thomas Rhett

Randy Houser

Nate Smith

Randy Travis

…and then I heard…

“God’s Country” by Blake Shelton

Blake Shelton Takes 2019 CMA Awards to 'God's Country' [WATCH]

…an hour later I had downloaded every single song, album, collaboration he has ever done.

I made him his own playlist, in fact I made him three.  I put the same songs on the same playlist six times so I didn’t have to wait too long to hear “God’s Country” again.

Then I made playlists for all of the country singers I’d downloaded.  I had a…

A full list

A quick list

A short list

And a…

Cherrypicked list.

At work I waited for the same songs to come on my radio.  It’s an obsession, a compulsion, it’s an addiction.  It’s a feeling that leaves me empty and on edge if I don’t hear the voices of those singers singing the lyrics that I have to make sense of.

That’s when Bernard stepped in and took away every little bit of enjoyment of listening to music and gave me a mission that I had to complete but every time this happens I am never told what that mission is until I find it in the lyrics.

What Bernard doesn’t realise is, country music is fairly self-explanatory.  You can’t find much more meaning in drinking beer in bars and picking up girls in pick-up trucks.  Country music is about country life, it’s fun and it’s sad all at the same time.

People like to ask…

“What caused the episode?”

My answer is simple…

“Nothing.” 

Maybe my brain wanted to get my attention. Maybe it was bored of being sensible and something to get its teeth stuck into something different.  Maybe this time it was in the shape of a…

Cowboy Hat Illustrations, Royalty-Free Vector Graphics & Clip Art - iStock

…cowboy hat.

In the middle of my episode when I was desperately trying to find the meaning in Blake Shelton’s song…

“I’ll name the dogs”

…someone said…

“There are meanings in every song you’re listening to, just not the meanings you’re looking for.”

Three months after my fascination with country music started, I’m still downloading songs and making playlists but I don’t feel that Luke Bryan or Blake Shelton are trying to communicate with me anymore.  But if I’m honest, that’s both a relief and disappointing.

My happy place is music. My version of serenity is relating to a singer’s words and finding comfort and distraction in their songs.  My iPod is my journal, it bears my soul; it’s something that can put me at risk but more often than not it keeps me safe.

When everything around me is a maze of chaos and noise I can immerse myself in the idea of ploughing maize and catching crayfish.  In my head I can dance in a barn and drink whiskey with farmers, drive pickup trucks and chew on straw.  I can have faith, be comfortable in a checked shirt and not worry about the accidental holes in my old jeans.

I can drink beer out of dixy cups and party in a field of corn and as I sit here now, I find absolutely nothing wrong in any of that!

So now that my Bipolar episode is passing and my head is becoming clearer; now I can look at myself in the mirror and not wonder who is staring back at me because now all I am is a listener. I am a country music fan and I am proud to just be Katerini and…

…addicted to Blake Shelton.

Dedicated to everyone who helped me through this latest episode. Thank you for the late night messages, checking in, indulging my obsession and keeping me safe. If it wasn’t for all of you we could be looking at a very different picture xx

Share:
Reading time: 11 min
The handy work of Glenys Spathis

Over the last three days I’ve discovered that life can be a combination of three things…

  1. The good
  2. The bad
  3. The ugly

Want to know why?  Well sit comfortably guys because I’ve got a three-part story to tell – but not necessarily in that order. 

The Ugly

Now I’ve made it no secret that my stoma has been a little more than problematic over the last three years.  I know I’ve talked about rectal brain matter and prolapsed intestines, not to mention constipation and you all know that Wilomena blows up to the size of a tennis ball so it must come as no surprise that we’ve been waiting for the last two and a half years to sort this out.

About a month ago – almost three months after attending A&E at Wythenshawe hospital, a letter dropped onto my doormat informing me that my face-to-face appointment with Ms Telford (creator of all things Wilomena) would take place on Wednesday 15th December 2021. 

The appointment was at 3:30pm, so what’s the best way to spend half a day before we have to go to the hospital?  Go Christmas shopping at the Trafford Centre with mum, of course. 

What did I buy, you ask?

A bacon sarnie and a bottle of baby shampoo – absolutely nothing Christmas related whatsoever but we did have a nice morning together and it is the perfect place to kill time when you’ve got something that’s make or break hanging over your head.

Let’s cut to the chase now because no one needs to know that as we drove to Wythenshawe Hospital I had to ask mum to stop at Sainsbury’s around the corner so I could use their toilet for a nervous wee.  This appointment was a long time coming, it’s been like climbing the Himalayas (I’ve never climbed the Himalayas but I’ve heard its pretty steep) so as I sat in the vacant waiting room trying not to hyperventilate under my mask, clutching the strap on my rucksack and fumbling in the front pocket for my phone, I looked around and I got a glimpse of Ms Telford.  It was relief!  She was here! It was real!  It was just like the moment when you’re at a concert that you’ve been waiting all your life to go to and the lights dim, the crowd goes wild and the singer comes on and you think…

“…I’m here!  We’re in the same room, we’re breathing the same air…”

That’s what it was like seeing Ms Telford in a corridor, it was like seeing Cher in concert!  With this in mind my nerves kicked in.  Now I knew that she wouldn’t be doing the initial examination but she would pop in at some point to check and then clarify things but even so, I couldn’t help but panic. What if they didn’t look at Wilomena, what if they didn’t look at anything?  What if they did the same thing everyone else has done and they just said…

…absolutely nothing.

Last Chance Saloon – Self-Titled | Album Review – Blues Blast Magazine

It’s hard to describe what the last chance saloon looks like, but I’m pretty sure it looked like this appointment.  I’d been through every other avenue and got nowhere.  The GP’s told me to lose weight. They said I wasn’t putting my bag on properly.  The stoma nurses told me all stoma’s look the same, mine was no different.  They said my stomach muscles had dropped – I don’t even think that’s possible but I went with it because they’re supposed to know what they’re talking about.  They’re all supposed to know what they’re doing! 

I can’t explain what it was like sitting in that corridor waiting to see someone whose role it was to find out what actual problem is…but this is a blog so I’ll try… It was like being an X-Factor finalist waiting to see if you’re in the running for Christmas number one, 50/50.

I was called into the room by a really tall man with a kind face and he said my name wrong but I didn’t care.  I walked into the room and he introduced himself as…I have no idea…  I’m really sorry but his name flew right over my head and I feel awful because he was so nice so let’s call him Mr Surgeon, because I do remember that bit, he said he was a surgeon.

The first thing Mr Surgeon said was…

“We were supposed to see you in January.”

(and he didn’t mean 2022, he meant 2021!)

I said…

“It’s okay, we can blame Boris for that.”

He said…

“This is our fault, it shouldn’t have taken this long, I’m sorry you’ve had to wait.”

Inside my head I said…

“Don’t cry, do not cry!”

We sat at his desk and before he could say a single word, I took out my phone and I said…

“I’ve got pictures!  I’ve taken pictures and a video of what my stoma does and no one else has looked at them.  Do you want to see them?  Do you want to see the pictures?”

My phone was literally shaking in my hands and I felt ridiculous.  I was not on trial, but it felt like it.  I was not in an interview, but it felt like it. I knew that if he didn’t see it for himself, if he didn’t look at the photos on my phone then I would be leaving the room with the same thing that I’ve left every single other room…nothing.

So he looked at the photos and then he stood up and he said…

“Let’s have a proper look then.”

I thought…

“Eh?”

I said…

“Do you want me to take my bag off?”

He said…

“Yes, let’s see what it’s doing in there.”

I took off my bag and true to form Wilomena was bulging like an angry bloated garden worm and I thought…

“Oh thank God!”

Mr Surgeon had a look, he poked it, prodded the area around it and nodded.

“Okay you can put your bag on now.”

At the sink I sorted through the swabs and a clean bag with my stupidly shaky fingers, he had a look at the computer screen and then turned back to me.  He explained that the stoma had prolapsed and it was always a risk of stoma surgery anyway.  The option to fix it is it to re-site the stoma, so build a new one, but it’s still a possibility that the same thing will happen again. I had to weigh up the option of whether or not I wanted to risk it. 

As I stood by the sink with a naked Wilomena flopping about out like a really inappropriate and badly designed Christmas bauble I said…

“I’m not a hyperchondriac.  I am not making this up and I am not making this out to be worse than it is.  I love this thing, but this thing hurts!”

And he said…

“No, I know that.  There is a very real problem despite all the other letters pointing to it being in your imagination.”

My eyes filled up with a river of tears.  Can you imagine what that felt like? 

It was humiliating.  In my imagination?!  It was more than soul destroying, I was completely destroyed.

I waited about ten minutes to see Ms Telford.  She swooped in like a caped crusader and straightaway she said…

“You’ve waited too long for this.”

Then she looked at the photos on my phone, she looked at me, poked around the edges of my clean bag and said…

“I would never have given you a stoma this big.  Let’s refashion it.  Let’s give it a facelift.”

(basically I don’t need a new one, she can just fix Wilomena and she can stay where she is)

When I told her about the colon problem she said…

“What have you used in the past?”

I said…

“Nothing, the stoma nurses and the doctors say to just ride it out.”

Ms Telford said…

“That’s rubbish, there’s all sorts of things you can try before we decide to take your colon out, but we’ll runs some tests to check and see how damaged it is.”

I told her a surgeon at Bolton hospital told me would never have given me a stoma and oh my god I cannot begin to describe what the atmosphere in that room felt like.  It was disbelief and horror mixed with a million apologies that wasn’t their responsibility to make.

When Ms Telford and Mr Surgeon looked at me for a final time she said…

“I’m going to put you on the list for a re-fashioning.  I don’t know when it will be but you’re on the list now.”

…and there was that sound again, the voices of a thousand angels singing; and they said…

Angels Singing Actual Footage | The Angel's Medium

You’re in the right place now.”

As I write this I know I could be waiting for Wilomena’s facelift for years but in some way it doesn’t matter because now I know I’m finally being taken seriously; now I’ve proved I’m not a hypochondriac and I am not being dramatic.

I think it’s fairly obvious that the professionals who wrote the previous letters were distracted by my Bipolar diagnosis and you can argue the case against that but when you’ve been sat in my shoes for a long enough time, it will only take a few seconds for you to agree with me.

This blog is not about feeling sorry for myself because you should know by now, that’s not my bag (literally).  This is about turning something ugly into something pretty; and that’s exactly what Wilomena will be when she’s had her facelift.

The Bad

My mum comes from a family of around eleven aunties and uncles and sixteen cousins.  When she was growing up she lived opposite two of her cousins David and Graham who I always thought of as uncles; they might never have known that but I did.  I thought a lot of both of them because in my eyes they were the opposite of my dad, they were kind, they were open minded and I never felt judged; I always felt accepted.

A few years ago I was having a whinge to Graham, I can’t remember what it was about but at the end of my rant as he was drying his hands on the tea towel he was holding, he leaned again the sink and he said…

“You know what that is Kat?  It’s all part of life’s rich tapestry.”

Appletons Tapestry Wool Hanks ~Special Order Only - Royal School of  Needlework
Tapestry apparatus

I don’t think I’d ever heard anything quite as profound as that and I can’t think of anything I’ve heard since that beats it.  When he passed away a few years ago, that was the one sentence that I made sure I remembered.

David passed away a couple of weeks ago with his funeral set for Thursday 16th December 2021.  At the funeral the eulogy was a recollection of the man he was and all of the incredible things that he did; things that I didn’t know about.  It was sad, really sad and it was a reminder that people leave us regardless of how much we want them to stay.

When I was a kid David used to ask me what I wanted to be when I grew up, I always answered…

“A writer, like Enid Blyton.”

I remember showing him the battered exercise book I was writing my first novel in aged eleven.  My dream may still a dream but it was supported and whenever I was in hospital battling against Bernard the Bipolar, David and his wife Joyce wife always sent me a card.  Graham sent postcards when he went on holiday and I still keep them all as bookmarks in my notebooks as a reminder that I can still be whatever I want to be.

The Good

All things public speaking is a little like a river run dry right now, that is until the 6th October happened.

I’m on LinkedIn but I’m rubbish at it.  I don’t know how it works, I don’t really know what it is and I forget to post stuff on it.  Whenever I receive a message it’s usually someone wanting to train me as a speaker – already got that, thanks – or the want me to speak at a massive conference in Paris but I have to pay my way to do it.  So on the 6th October when I received a message from Nico Bains I automatically assumed it was the same sort of thing.

Oh how I was wrong!  And I love it when I’m wrong about these things.  Here’s the link to the project he’s working on with his brother Ryan:

https://www.flowstateofficial.co.uk/pages/workout-for-mental-wealth-1

We had a couple of messages and then a call and I felt a tug, right in my soul.  Their focus is mental health and fitness and finding the right kind of fitness that benefits you and your own mental health.  I did tell him, I was honest, the only time I do any kind of exercise is when I’m running for a bus; when he said that didn’t matter and that he just wanted me involved in some way I said an automatic yes!  I’d just lost my friend and the day we had the first call it was her funeral the day after.  I thought now more than ever was the time to stand up and do something. 

Covid is killing people in far too many ways and it doesn’t look like anything is going to change any time soon so rather than doing what I’ve been doing for the last twelve months – waiting for it to pass – I thought it was time to take back some control.  Nico has a vision of what he wants and he’s found a whole stack of people to take part in this massive project with the intention for it to reach people across the whole of the world.

Long story short, Nico and Ryan came up to Manchester from Luton on Friday 17th December to film my story following the story of another person. They hired a studio just on the outside of the city centre that was up about five flights of stairs – now that’s exercise right there!  I took my mum with me – obviously, my roadie – I had no idea what to expect, I had no idea what I was doing but I had to look professional, however being in front of a camera is not my happy place.  I am far from being a Love Island contestant, my hair is falling out left right and centre, my dress was bulging on one side because Wilomena wanted in on the action and the minute this filming session was finalised, a giant spotty blob blob thing formed itself on my chin – I mean really!

But did any of that matter?  In the end no, not really, because I loved every single second of it.  Nico and Ryan are two of the most genuine guys I’ve ever met.  They asked mum if they could call her mum and for the rest of the afternoon we were like a little family; everyone trying to right the wrongs of the mental health world.

For the first time in months I felt part of something that was outside of work.  I was accepted, not just based on being a mental health speaker but also as an individual, the kind of person I am, for real. And this is just the start, this was just the introduction to my tiny part of their huge project and I can’t wait for the next one. 

These guys are travelling across the country to collect the stories from the people they’ve got involved and they’re asking for nothing but our time and that right there is what I call…

Nico and Ryan: good things come in different sized packages

…self-less.

In truth the last three days have been exhausting.  Everyday I have learned something new.  I’ve learned that even with a physical problem, a real black and white problem, a stoma that cries out…

“Hey!  I look weird and I make Kat hurt!”

…I am not believed because I have another illness that you can’t see.

I’ve learnt that we don’t appreciate what we have until its gone.  We don’t say thank you enough to the people who make a difference in our lives and we don’t realise that the dreams we have can actually play out; they just might look different.

I’ve learnt that good people do exist.  LinkedIn is not always about selling something to someone.  It can be about taking part and working together for a cause that will always need people to plough on through because it never gets easier. 

It never gets easier, but people can get stronger.

The last three days have been an array of life changing events and emotions and not just for me.  There are a lot of things I don’t understand about life and every day I try to wrap my brain around how the world works but, if there is one thing that’s for sure and one thing that I do know; it’s that everything we do, everywhere we go, whatever comes our way; it’s all part of …

…life’s rich tapestry.

Dedicated to David and Graham, for being the inspirations that you never knew you were.

Share:
Reading time: 15 min
Back in the day when I had a healthy thyroid gland a head full of hair…

It’s Saturday night… I’m not even going to try and dress this up anymore…next to me I have my tipple of choice, decaff tea, a two-litre bottle of squash because my drug of choice in the name of Lithium makes me thirsty and a piece of pumpkin cake smothered in cream cheese frosting – I actually had to eat a piece just for the photo, at least that’s what I’m telling myself.

Friday nights rock

Matt’s just gone to the cinema with his nephew so I’m home alone with the cat and a heated blanket because my house is freezing even with the heating on.

Before he left he asked me what this blog is going to be about and I replied…

“I don’t know yet…”

…which is true, I don’t; but off the back of falling into the bath the other week I’ve been thinking about a few things. 

I know I mentioned that a friend passed away in September and since then I admit I haven’t been the kind of self I like the world to see.

My friend was superwoman.  She was my idol, my Bipolar idol –  you can all keep Stephen Fry, I don’t need him because I had my friend – she was my Bipolar Mum.

Bipolar is a funny thing; it’s selfish and cruel and mean and it takes no prisoners.  It spares no one and doesn’t give two hoots about the carnage it leaves behind. 

On all the writers courses I have ever been on the tutors tell you to never use cliché’s, but Bipolar Disorder is just one massive cliché. 

You can have an episode and you miss out on months of your life and you say…

“Where has the time gone?”

You might make it through the hospital admission and in your Christmas card to your family you might say…

“I love you to the moon and back.”

And my personal favourite is one that I have yet to use…

“And they all lived happily ever after…”

Growing up I had a vision of what my life would be like and it went a little like this…

Dreaming big…
  1. School
  2. 6th form
  3. University
  4. Travel the world
  5. Meet a boy who plays the guitar in a band
  6. Get married
  7. Have one child
  8. Become a famous writer
  9. Live in a tiny village and ride a bike with a basket on the front
  10.  Die happy!

Nowhere in that list did crippling mental illness and misery appear.  It was not on my radar; it was not allowed and it certainly was not welcome because I had dreams, I had desires, I had a whole load of things I wanted to do with myself like graduating with my friends.  I wanted to throw my cap in the air and have a group photo with all of the people who had soldiered on through the three years of hard slog coupled with the parties and the crazy nights out that were never intended to happen but they just did.  It was supposed to be three years, it should never have taken me six.

I wanted to live in Edinburgh, a place that felt like home from the very first second my foot touched the platform ready to do my first Fringe Festival job in 2002.  I love that place, its energy, the creative chaos; it was something I’d never seen before.  I made life long friends, I saw things I would never see in Bolton.  I was a different person and I lived my best days there so was it too much to ask to just hang on to that and keep it? 

Gilded Balloon Box Office Assistant 2002

I wanted to travel the world.  In 2006 I went to Australia for six weeks and it was the trip of a lifetime.  I saw my Fringe Festival friends again and I lived in those six weeks the life I had always wanted.  Even though I  was diagnosed, I was physically scarred and I was teetering on the edge of an episode because I never really knew if my medication was right or not and I was still wondered if I really needed it when I felt well. 

Fringe Friends 2006

When I came home from that trip I made plans to go back on a working holiday visa; but Bernard had different ideas.  I was going on a trip, that was for sure, but it wasn’t to Australia…a locked ward on a psychiatric ward was as far as I was ever going to get.

Bipolar Disorder robbed me of the things I wanted most in the world.  It took from me…

  • Contentment
  • Satisfaction
  • Simplicity

Losing my friend didn’t put things into perspective; it tipped everything upside down and made me question every single relationship with every single person I have ever known.  Because at the hands of Bernard I have lost so many friends, people that I admired, people that I adored and would have fallen backwards in the bath for!

In the last few weeks I have asked myself…

“How embarrassing was I?

Norway 2003

When a friend who I thought loved me got engaged I could not have been more happy for her.  It was all she had ever wanted; to meet her prince charming and stop kissing frogs.  But when I was excluded from every celebration that took place in the run up to the wedding I was hurt – actually I was more than hurt because I understood her reasons why.

How do you introduce your friends and the family of the man you’re about to marry to a person who is the epitome of depressingly single?  She doesn’t have a job and she’s spent however many years going in and out of a psychiatric ward like the revolving door to a cheap hotel?  How do you explain to every successful person in the room that this is the kind of person you are associated with and you didn’t really want to invite them to your nuptial celebrations because it’s shameful to have someone so unfortunate in your life, someone who doesn’t match up to the rest of your acquaintances?  

“Don’t worry, I get it.”

But…

…How bad of a person was I?

Zakynthos Greece

Did Bernard make me bad as well as embarrassing.  I know I would sometimes look at my reflection and I’d wonder who the hell was staring back at me but, was I bad?  I know I was unrecognisable at times, different to the person I once was but was I really bad?

Was I a danger?

I know that I had a tendency to hurt myself but were the people I loved and adored worried that I might have the potential to hurt them?  When they had children did they think I was a danger to their child?  Or was I just too difficult to explain? 

Was I an embarrassing conundrum?

May be an image of one or more people, people standing and outdoors
I’ve always wanted to use that word…conundrum.

Now I don’t mean to hurt or upset anyone who reads this; that is not my intention.  This is just something I have to write because it’s been spinning around in my head since Bernard made an appearance nineteen years ago and I know I am not the innocent party in all of this.  I would even go as far to say that I have done exactly the same.  I put my hands up in the air and I will openly admit – because I am all about taking responsibility for my actions – I have cut people out of my life simply for self-preservation in order to move on from a chapter of my life that I don’t want to be reminded of.

I’ve said awful things about people… and I meant them.  I have lied, I have been a coward and I have run in the opposite direction of proposed happiness because I believed that I wasn’t entitled to it because of the person I had become.

A few years ago I said if someone was to put a pill in the palm of my had and say…

“This will take away your pain, this will take away Bernard and he will never come back.”

…I would take that pill and I would swallow it down with or without water and I would kiss goodbye to the illness that Michael Douglas calls…

“…a terrible disease…”

…and I would not look back my friends!  I would not look back.

In that room someone said…

“Even though it’s made you who you are?”

I thought…

“WHAT?!?!?!?!”

I was so insulted!  So I said…

“Bipolar is not there to be your friend; Bipolar is there to kill you.”

I know I upset people with those words because they implied that I would happily give up everyone and everything that had come my way since the illness or disease came in to play.

You know what?  The implication is an accurate one, I would. I would give up everything because it would mean having a simpler life and I would give up everyone I know because I believe in fate and I think if you’re meant to meet people you will meet them somehow; it doesn’t have to be because you have an illness.

My comment wasn’t well received and I was reprimanded for it but I still stand by what I said because I meant it but; there is no magic pill.  I can’t give everything up and I can’t get back time I feel I’ve lost nor can I get back the people that I still think about, still miss and still love.

I look at my life today and I can tick off four things on my childhood list and let’s put it this way, that’s more than what was predicted for me at the time of my diagnosis.  Sometimes lists aren’t always the things we should live our lives by.  Sometimes life just doesn’t go our way and no matter what we do sometimes life is mean.

But I am not ungrateful, I am not ashamed and I am not sorry.   I am thankful for the people who stood by my side and didn’t give up on me when they so easily could have.  I am grateful for all the opportunities that have come my way in recent years and I would not have been able do to those things if I had given in to Bernard’s demands and I’m not ashamed of where I’ve been or the people I met within those places. 

Over the fifteen years that I knew my friend she taught me how to spot the signs of my illness because on more than one occasion she knew I was ill before I did.  She told me that I could still be a success, it just might look a little different to how I imagined it to be.  She told me that Bipolar Disorder is a learning curve; it’s test after test after test and a constant reminder of what we have lost… but on the flip side it’s a reminder of what we still have and what we have in spite of it.

May be an image of one or more people and sky
Blackpool 28th September 2021

I’m happy now, believe me I am.  I know reading this it might not sound like it and in the last few months through my anger and my grief I lost sight of how to live the way my friend did for so many years.  I concentrated so much on every bad thing that Bipolar does to a person that I forgot that it doesn’t have to beat you.  

So now, even on my most self-indulgent and self-absorbed of days I promise to remind myself…

…that all that I have lost has given me everything I have.

Dedicated to my friend Sheila.

You will always be my Guru, my inspiration and my teacher. All I can say is I’m sorry… but I promise I won’t let it beat me.

Share:
Reading time: 10 min

Yesterday I fell backwards into the bath.  It’s my own fault; I was sitting on the edge of it cutting my toenails and balancing my feet on the edge of the toilet seat – never let it be said that I am not a classy girl, I do things in style – I must have been day dreaming or something – about what I’m not sure – but in my Primark pyjamas I’m must have moved ever so slightly and within a teeny tiny second I found myself battling gravity, flailing my arms about, my fingers clutching desperately to my Tweezerman nail clippers – like that’s the most important thing right now! – really hoping that…

  1. I don’t bang my head against the tiled wall…

And…

2. Look like a complete muppet.

Well I didn’t accomplish either of those things but I did get stuck.  My bathroom is not the biggest and neither is my bath, so found myself wedged at the bottom of it with my legs dangling over the edge and my toes dipping into the toilet bowl just scraping the water – again, I have nothing but class.

As I sat there I tried to call out for Matt to pull me out of my predicament but I’d shut the living room door so he couldn’t hear me.  In the end it was a complicated process of manoeuvring myself, twisting, reversing, shifting, turning – maybe there’s hope for me yet, if I’m ever able to drive in this lifetime that was a three point turn, a parallel park and a reverse around a corner all in one!

What’s my point?

Well, life isn’t very kind right now, in all sorts of ways and this is not about looking for sympathy; its really not, but the truth is, a lost a friend a couple of months ago and I didn’t deal with it all that well.   

I have lost myself.

In the middle of my grief and my guilt I lost what I thought my life was like. I lost the image of what I wanted it to look like and the one thing that I can usually count on, my written word; I lost that too. I contemplated shutting the blog down and just leaving it and I kid you not, I was so close to following that through but, my friend Renae told me…

No photo description available.
Edinburgh 2003

“You will find your voice again.”

…whether I have or not is a different matter, but right now there are words on the page and that’s a start. 

Back to the bath…as I’m being crushed between the sides of it I thought to myself…

“This is hilarious, but dammit! There’s no one here to see it!”

And then I thought…

“I can’t wait to tell Renae about this.”


And that right there is my point.  I found my situation funny; it was laughable, it was amusing.  I fell in to an empty bath while I was cutting my toenails! and even though my world is consumed by darkness; I am still grateful for the moments that make the edges of your lips curl upwards in a vague reminder of how to smile.

Today this is the point of this blog.  I have not been in the greatest of head spaces for a few weeks and I apologise for my behaviour.  I am plagued by Wilomena problems and the debilitating interruption in life that Connie colon likes to chuck into the equation – you know the drill, three days of phantom diahorrea pains and then a volcano of mush that looks like the equivalent of human brain matter coming out of an orifice that isn’t supposed to be in use anymore!

The other day I was sitting on the toilet – don’t pull your face, we all do it – while I was waiting for the brains to come out and in tears I kept thinking…

“How can anyone love this car crash?  How can anyone want to be in my life when every day there is just one disappointment after another? How can Matt love me?!”

Part of me was near to giving in…

Let Wilomena do whatever she wants… I don’t care anymore!

Let Connie colon fanny around in there shedding her bits off…I don’t care anymore!

Let Bernard the Bipolar just rip my sanity from the walls of my skull and we’ll call it quits… I don’t care anymore!

Well, I’ve had a few days of feeling sorry for myself, and I do still feel sorry for myself – I’m not going to lie – but I know I have two choices…

  1. Shrivel up and give up?

Or

2. Put my brave pants on and crack on.

I’m choosing to put my brave pants on.  It’s not easy and it’s just guess work and my only saving grace is my sense of humour.  Life is not always funny.  In fact it’s very rarely funny at all and it’s solely down to ourselves to create our own happy place and that’s something I’ve been doing my entire life.

When I was a child I wanted to be a comedian so I made up jokes that no one else found funny…

Knock knock

Who’s there?

Table

Table who?

Table leave the table…

…I can only apologise…

When I was in primary school I wanted to be an impressionist and my passion, my obsession at the time was Coronation Street; I wanted write it, I wanted to act in it; I just wanted to live it… So I memorised the voices, the accents and the movements of all of my favourite characters and I performed them.  I performed them for my family, in the playground for my friends and I captivated the attention of an entire room at Brownies every Tuesday night relaying my rendition of Audrey Roberts and Deirdre Barlow.

On coach trips with my Brownie pack, I was always the one to start off singing There Were Ten a Bed, only I started it off with ninety-nine and it was a mission to see how far we would get before Brown Owl stood in the aisle of the coach and yelled out…

“Right! Enough!  There’s one left in the bed, tell it to roll over.”

I had people laughing in the palms of my hands, some even had tears streaming down the sides of their faces.  I made up sketch shows, I was a writer, a director, a Greek dancer and I tried to teach my friends the Zorba only I hadn’t fully paid attention in the dancing lesson at Greek School (that’s not a lie, my brother and I genuinely went to a Greek School every Saturday) so I just kicked my legs up a bit, ran from left to right a few times, did a swish and made my face look like I was really concentrating because I was thinking to myself…

“…one day there will be a real Greek dancer in this room and I will be shown to be the fraud that I am…”

From the age of about fifteen I was a massive fan of the Manchester based band Puressence.  Somehow they were massive in Greece and from 1992 to 2013 and I saw them live nine times – yep, I haven’t even seen Josh Groban that many times! – not only was I in complete awe of the singer but I lived for his lyrics so when the band split I was ever so slightly disappointed.

Puressence – 1992 – 2013

Now fast forward to September 2020 when I’d just got my current job, I had a day of online training and it was just me and the trainer on Teams.  He asked me if my name was Greek and he went on to say he used to be in a band and they played a lot of gigs in Greece.  I got half way through the day when I thought…

“Band in Greece.  Band in Greece? Could it be???”

After the break I asked him…

“What was the name of the band you were in?”

He said…

“You won’t have heard of us but it was Puressence…”

To which I replied…

“Are you kidding?? I have every album and CD single you released from 1996! I saw you play live nine times!!!!”

When I told my friend that afternoon he said…

“Did you not recognise him on camera?”

I said…

“No, I fancied the singer, I didn’t look at anyone else.”

James Mudriczki – 2004(ish)

I love reliving that moment because it brings me joy.  You very rarely get to meet your heroes and sometimes the ways in which you do are far from what you ever imagined. 

When I started my job the very next day that was the ice breaker.  When people asked how my training was I could answer their question with a tale that was so bizarre it opened the door for a million more questions.

In 2019 I booked tickets to see James Mudriczki (Puressence lead singer) performing as a front man for another band; due to Covid the gig was moved to three different venues and four different dates. 

The final destination

I haven’t seen this guy sing since 2009 and he’s knocking on a bit now – No offence James, I’m nearly forty so it’s inevitable for both of us – I took Matt with me who was extremely reluctant and I used the classic “date night” tactic that people seem to practice these days and off we went.

Date night

It was like being an indie music fan back in the 90s.  I was standing in the smallest venue I’ve probably ever seen any band in, which obviously meant there was a chance I would get to meet said lead singer, so I said to Matt…

“Look for a guy with grey-white hair and funky glasses.”

When we looked around, every single man in the room was still trying to master the art of Paul Weller’s grey-white hairstyle with added funky glasses while others were still wearing the kind of coat Liam Gallagher has been wearing for the last 25 years.  But one thing was for certain; there was absolutely no risk of being trampled on in a mosh pit… because every person in the room bar was probably at risk of damaging a hip or knee replacement. 

Standing next to us there was a girl with a guy who was clearly twice her age and you could just tell that they probably met in some dodgy bar where she was trying to pull off maturity and he was trying to convince himself and everyone else in the room that even when you’re 40+ you can still spin lines like…

“Come out with me, I’ll take you nice places for dinner and then we’ll go see a band who have albums three times older than you…”

James Mudriczki – 2021

As I was looking up at James Mudriczki singing with the same ridiculously amazing voice that he always had, I noticed the sadness from my youth has been replaced with something different… It’s still sadness – in some way – but I can try to take the reigns on my unhappiness whereas I didn’t know how to do that when I was younger.

I may feel mental and physical pain and that’s down to circumstances, but my biggest fear; my ultimate, terrifying, awful, horrendous nightmare is that I could give up on myself and become everything that I have always fought against; because if I did that, it’s game over.

Over the last few years I have learnt one thing… if you can find laughter in a world that is more often than not, far from being funny; then you’re half way to being able to survive everything it throws at you.

In every uncomfortable or questionable situation I find myself in I always try to find something funny about it in order to get through it. Now,  I am not a comedian.  I am far from being an impressionist and my feet lost all sense of rhythmic ability many years ago so  I am not a Greek dancer. I am not everyone’s cup of tea, but one thing is for sure; whenever I am in doubt, when no one else is laughing and all I have to rely on is myself…

…at least I think I’m funny...

Christmas 2005

Dedicated to my friend Renae. You have given me so much encouragement, support and love and you have no idea how much I love and admire you. I don’t know how long this will last but, I think I found my voice.

No photo description available.
Australia 2006
Share:
Reading time: 10 min
We’re celebrating! Believe it or not…

Have you ever been asked that fateful question?

“Where do you see yourself in ten years time?”

Well I haven’t.  But I’m pretty sure if that question had been asked ten years ago, I wouldn’t have been able to answer it.

Truth be told, ten years ago my future looked and felt very different to my current reality.

In 2011 I saw myself falling into one of three destinies…

  1. Death
  2. Existence
  3. Saviour of the universe.

I know they range in desired qualifications and it’s difficult to explain how the third one came about but let me try.

Bipolar disorder doesn’t come with a script.  You don’t get a synopsis with your diagnosis and you don’t get a manual to help you deal with your symptoms.  It’s like being a kid at the dinner table; you have to eat everything on your plate even if you don’t like it and you have to use whatever utensils are in front of you regardless of how big or clumsy they are because that’s all you have.

As my illness unfolded throughout the years I experienced a range of symptoms that evolved and grew in intensity; they morphed into shapes that were the beyond my capability to comprehend and they left me damaged like a lost and beaten animal cast aside on the side of the road.  I know that sounds dramatic but when Bernard the Bipolar cast a spell of a dark depression, all I wanted was death.  When I was climbing out of that depression a mere simplistic existence was the most desirable outcome that I could picture for myself.  And in the throws of mania I was cursed with torturous voices no one else could hear.  I saw things, shapes, people, colours and smells that no one else around me could sense – try explaining that to your mates over a pint. 

I couldn’t explain it, I couldn’t understand it and because of the absence of any kind of Bipolar instruction manual the only thing I learnt how to do was perform the art of…

“…I am completely fine…”

…and not a single soul would question me because to this day I can look and appear perfectly fine when in fact I am dancing with a faceless demon that takes no prisoners and spares the lives of no one.

On the 9th September 2011 I had been dancing with that demon for weeks and I had no idea.  My lack of sleep gave me no indication that I had anything to worry about.  My increased energy levels were a blessing because they made my twelve hour working day easier to cope with and nothing, absolutely nothing inside myself told me that the messages I was getting from the singers on my iPod were in any way detrimental to my mental health.

It’s funny; looking back at that last paragraph it just screams out…

“…MANIA MANIA MANIA!!!”

On Friday the 9th September 2011 I had a phone conversation with my psychiatrist (at the time) Dr Miller…I have never forgotten that call. 

With a tight chest, my eyes streaming, I remember I couldn’t breathe, I couldn’t speak but I remember him saying…

“You need to talk to me Katerini because I can’t see you until Monday.”

I said…

“I’ve got special powers and I don’t know what to do with them.”

He said…

“Go to A&E and I’ll send someone from the crisis team to meet you there.”

Following those few sentences I found myself an inpatient for four and a half weeks.  I was almost sectioned and I spent my days writing the plans of how I was going to save the world because Chris Daughtry, Meat Loaf and a number of other singers were all communicating with me through the songs on my iPod. 

They told me I was the saviour of the universe and I was the one person in the entire world who had the brains and the ability to create a plan of action to save the world.  All I had to do was create the plan and let David Cameron do the rest…

…I’ll just leave that there…

In 2011 all I had in hospital with me was a tiny radio.  No phone, no iPod, no internet access; nothing but my portable radio and a pair of potentially crusty earphones.  All I wanted to listen to was Josh Groban and Meat Loaf but they were rarely played on the radio so I tried my best to remember the lyrics of my favourite songs and I tied them in with my save the world manual so it would be easier for me to explain how things would work.

My lifeline…

In the first week of my admission I gave my “manual” to Dr Miller and he said…

“…What if this isn’t possible?  What if you can’t save the world?  What if you’re just ill?”

I said…

“…then this no way for a person to live.”

He said…

“What do you think we should do?”

I said…

“I want a Lobotomy.”

And he was trying his absolute best not to smile as he said…

“You know we don’t do those anymore.  What if you died?”

I said…

“Then you would know not to do it again.”

He could see I was deadly serious, there was no smile on my face and I was not budging on my save the world manual either; I was deadly serious about that too.  But the one thing that made this admission different to the previous five was the feeling of it being make or break. 

This was the worst one, this was the one that I didn’t see coming, this was the one where I would look back and I would say…

“…I don’t know how I survived that.”

This was the admission where my friends and my family would look at each other and my mum would say…

“…I don’t know how we’re going to get her back from this…”

BUT…

…this blog is not about dredging up unpleasant memories. This blog is a celebration of me being hospital-free for ten years!

You can argue you against me if you like but for me this last ten years is almost like being sober or being clean.  Hospital is not an addiction but it is a curse and it is impossible to return to a normal life without just a little bit of help. 

When you’ve been contained on a ward with people you would never normally encounter and your daily routine is driven by the allocated times that the tea trolly comes rolling out of the kitchen, it’s hard to know what to do when you can suddenly go wherever you want to go and eat food you don’t think is poisoned by the hospital staff.  When I had my phone in my hand it was hours before I could decide on who I wanted to text first.  As for my iPod…that took a little bit longer to fire up.

That last admission was like a long-drawn-out horror film.  The last horror film I watched was Insidious – awful. It’s like watching that on a loop, you get used to seeing the same things every day, but it doesn’t get any easier to endure.  But what made this admission different was my psychiatrist. 

Hand on heart Dr Miller quite possibly saved my life.  He was firm and he was to the point.  He challenged my beliefs and my ideas and despite me arguing against his educated assumptions, I liked him.  I have never had another psychiatrist quite like him and I know that everything he did for me, before, during and after hospital was just part of his job description, he has no idea of the effect he has had on my life since then.

In that first week of my admission he had in his hand my save the world manual and he had spent a good fifteen minutes (unsuccessfully) trying to question everything I’d written and suddenly he said…

“…Katerini, I will get you the life you want and the life you deserve.”

I thought that was such a beautiful and kind thing to say, but the life I wanted was the very manual he was telling me I couldn’t have.  In that moment he reminded me where I was, a psychiatric ward, and he told me to think about why I was there, how had it happened because then maybe we could find a way out of it.  He said…

…you have to learn about your illness Katerini, so that you can take control of it, rather than it, taking control of you.”

I’d never heard anything like this before!  No one had ever said this was an option.  I had no idea that it was even possible to take control of something that was so debilitating and all consuming.  When I left the review room that day, I walked back on to the ward; I saw the drinks trolly with the wobbly wheels, the TV was blaring, the patients were scattered around the lounge room sleeping in chairs, pacing the floor, there was a nurse playing chess, a support worker on obs and a student doing her best to talk to someone who really didn’t want to talk to her.

I looked around that room and I thought, this is my reality.  This is where I am and…I don’t think I want to stay here.

Now don’t get me wrong, I still thought I could save the world, this realisation wasn’t magic.  I simply thought if I could change my mindset slightly I could get out and I could still meet David Cameron and do what I needed to do, but take back some control.

My guide to saving the world…

During those few weeks Dr Miller changed my meds, he tweaked them, he listened, we agreed, we disagreed.  He was strict, he made me cry, I got really cross, had a hissy fit and left the room, only to have a change of heart and apologise minutes later.  I was not an easy patient and anyone who knows me as I am today finds it difficult to believe that I could ever have been the person I used to be.  But that’s the nature of Bipolar, that’s what mental illness does, it changes everything about you beyond any recognition.

One thing Dr Miller did that I absolutely hated and I had a visible tantrum over – I might as well have sat in the room with my arms and legs crossed and spat a giant dummy out in protest – he referred me to community care.  Oh god help everyone in that room.  He said…

“How do you feel about being referred to community care?”

I said…

“No I don’t want it.”

He said…

“Well I’ve already referred you.”

I said..

“Well can you unrefer then please.”

He laughed (the cheek of it) and said…

“I’ll find you a good one.

I said…

“Well you‘d better, because otherwise I won’t talk.”

See what I mean?  Completely unreasonable.  But you know what?  That was the best thing he could have ever done for me.  He didn’t mess about.  He knew I was awkward and headstrong.  I’d kicked community care to the curb countless times over the years.  I’d refused social workers and psychiatric nurses entry to my house on account of their uselessness.  I’d been offhand and rude, arrogant and stroppy and I had no intention of changing this side of my behaviour.  As far as I was concerned the system was working against me, trying to keep me in a box where I wasn’t allowed to work or have friends or relationships.  I was scarred from the words said by social workers six years before this moment and as far as I knew; that kind of attitude hadn’t changed.

Enter Aisha, my community psychiatric nurse…in my presentations I call her my caped crusader. 

See the source image

When I met her for the first time I was still an inpatient and she made the biggest mistake she could possibly make.  She was fifteen minutes late… so even when she said hello with a kind smile I didn’t care.  The first thing I said to her was…

“You’re late.”

Even when she apologised I still didn’t care.  I’d had to wait, I couldn’t go anywhere but that wasn’t the point.  We had an appointment arranged and she was late so that did not bode well for our future together.  I went on to say…

“I don’t want this.  I don’t want you, I don’t need you and I’m only in this room because Dr Miller said I have to be and he won’t discharge me unless I comply.”

I said exactly those words.  I was horrible.  I was a nightmare.  I was that one customer everyone dreads serving in a restaurant because even though there’s nothing wrong with the food they still find fault with just about everything.

See the source image

Credit where it’s due though, Aisha handled me with expert hands.  She was a breath of fresh air in a stale room and within twenty minutes she reigned me in, told me the truth and basically gave me back my dummy.

Aisha was the one person who corrected all of the wrongs I had been told in the past.  She wasn’t there to tell me to stop working.  If I wanted to do something in life she was there to support that.  She was there to follow through on Dr Miller’s promise to get me the life I wanted and the life I deserved.

This was all I wanted.  No one had ever told me that I could ever live a happy and fulfilled life with a mental illness.  So I apologised. 

A week later, on the day of discharge, I apologised to Dr Miller.

You said you’d find me a good one and I think you might have done that, so I’m sorry if I was rude.”

I had Aisha as my CPN for nine years.  She changed my life, she really did.  She taught me how to take control of my illness when I had no idea that that was possible.  She educated me on the medication I was taking and helped me to manage my working and social life, making sure I had a balanced mind.  She taught me how to recognise my symptoms and the possible triggers surrounding them.  I was a person, not a diagnosis.  I never felt judged or belittled.  I felt accepted, for the first time in years I felt human.  Without Aisha’s help and guidance I would not be here to tell this story.  I would not be the person I am today and anything that I have achieved since 2011 would probably not have been possible.

As I walked out of the doors of K3 in October 2011 I looked back as they locked behind me and I promised myself one thing…that I would never walk through them.  No matter how hard life might be, I promised myself that I would never be an inpatient again.

Over the last ten years I have:

  • Worked a full-time job
  • I met a boy
  • I bought a house
  • I got married
  • I became a public speaker
May be an image of 4 people, including Katerini Edgington-Spathis and people smiling

I swear this blog is not about blowing my own trumpet, but if I’m honest not one of those things would have been possible if I hadn’t recalled Dr Miller’s words and made the decision to take control of what was going on.

In 2021 I know I rely heavily on medication to keep my sanity in check and my rigid routine isn’t for everyone, but the lack of caffeine, being tee-total and cutting people out of my life in order to lead a better one has been worth it.

The blood tests, the scrutinising psychiatric appointments, baring my soul in therapy that didn’t really work and having to give up the possibility of a driving licence in exchange for a bus pass is worth it.  It’s all worth it because when I wake up to the sound of my alarm and I stand in my shower listening to Smooth Radio I know it’s my shower. When I ride the tin can bus to work it’s because I know where it’s taking me and I know I have a purpose for the next six hours.

See the source image
The Rivington Unit

And when I walk past the Rivington Unit every day, that flicker of a moment when I remember the other patients I met on the ward, the ones who held me afloat, the ones who made it and the ones who didn’t, that momentary sadness is worth it because I know where I have been, and I know where I am now.

But most of all, I never forget to remind myself of how lucky I was ten years ago to have had the medical team I had.   I’m not looking for a medal or a round of applause, I don’t deal well with praise so this is not a plea for congratulations and I’m not trying to seek attention – which coming from a public speaker who can stand in front of hundreds of people and talk about herself for over an hour is kind of hard to believe I know – but believe this, I’m not saying…

“…Look at me, look at what I’ve done…”

…I’m not.  All I’m saying is, if you really want to achieve something, if you want a better life, then it is doable. It’s about taking control and deciding if what’s being laid out in front of you is really what you want.


A life yoyoing in and out of hospital, living in a world consumed by delusions of being the saviour of the universe, exhausting mania and crippling depression was not a life I would have chosen for myself.  Growing up I never really knew what I wanted because I never really knew if I’d be around to actually have one. 

Life is hard, for all of us.  And I will never say that taking control of Bernard has been easy, no it hasn’t!  I’ve had episodes over the years, bad ones, I’m not joking.  I’ve had medication changes, I obsess over music on a daily basis and I am always one song away from wondering if whoever I’m listening to is trying to tell me how to save the world.  That never goes away.

In the last two years I’ve learnt that you can never know it all.  Bernard changes and he gets ugly and he gets big and sometimes I panic and I feel like a failure because I think to myself…

“…how the hell am I going to get through life if this keeps happening?”

When I left hospital in 2011 I had no intention of ever going back, so every single day I remind myself that I am not who I am because of my mental illness; I am who I am despite my mental illness, and this…

…is the best of my intention...

May be an image of 1 person and smiling
Got me a t-shirt

Dedicated to Dr Miller and Aisha. Should you ever see this please know that I am grateful for everything you did for me and still do to this very day. You might not know it but you play a huge part in my speaking career and one day I would love to have you both in my audience, I promise I won’t embarrass you…

Share:
Reading time: 17 min

I had a whole blog planned out for this weekend. I’ve mad notes throughout the week and I was really looking forward to writing it… but plans change. Maybe I’ll get around to the main event tomorrow but for now, let me set the scene for this blog right here.

It’s almost 8pm on a Friday night and in true Katerini style I am sat in my pyjamas with tea in my blog writing mug. 

There are no chicken crisps this time but I do have a couple of chocolate eclairs in the fridge that mum bought for me – thanks mum. 

The sad thing is, right this second I can’t stomach those eclairs.  I’m looking at them and my eyes are saying…

“…yes please!”

…but everything else in me says…

“…not right now love.”

Why?

Well, take a seat guys because this will either make you roar with laughter or you’ll end up closing your browser in search of a more appealing subject.

Everyone knows I have a stoma and everyone knows her name is Wilomena.  What most people don’t know is that Wilomena is not very well and hasn’t been for quite some time.

I knew there was a problem about two and a half years ago when my little weird button shaped blob turned into a tennis ball poking out of my tummy.  It was massive!  It twisted and it grinded and I felt sick and the only way I can describe the pain is by asking you to imagine what it might feel like if someone had the fist of a giant and they were squeezing your organs and crushing them…then letting go…and then changing their mind and crushing them again.

I knew this wasn’t right, so I saw the stoma nurse and she said…

“…everyone’s stoma sticks out.”

I said…

“But mine didn’t look like this before.”

She said…

“They change, it’s normal.”

But the pain wasn’t normal.  And neither was it’s appearance so I went to the GP.

He said…

“Lose some weight, it’ll feel much better.”

So I did.  Still felt the same.  Then I got a mystery infection and I was admitted to a surgical assessment ward at the Royal Bolton Hospital but they didn’t look at it and they didn’t treat the infection.  The surgeon didn’t do anything except say…

“You’re too young to have this type of stoma.  If it was me, I wouldn’t have done it.”

Well thank the lord it wasn’t him!  Not to be dramatic but I’m pretty sure I’d be dead if my life was in his hands.

I asked another GP to refer me back to my surgeon at Wythenshawe.  She did…she referred me to the wrong surgical department…

Long story short, welcome Covid! And I’ve been waiting to have a face to face appointment with my actual surgeon since March 2020.

Has time become a healer?  … No.

Has my stoma changed? … No.  It still looks like a freaky tennis ball.

Am I still in pain? … YES! I am! I am still in pain and guess what?  Barely anybody knows because I just get on with it. 

I’ve been waiting for the day for another trip to A&E because without treating the problem it was inevitable and I know that due to Covid, no one is really getting the care they need and if you don’t complain you don’t get seen.

DISCLAIMER: If anyone is eating their midnight snack or drinking your morning coffee, or whatever you’re doing right now; this bit might not be for you and I am not offended if you do decide to close your browser but I say this every time.  This blog is for truth, my truth.  And I’m not about to tell any lies when it comes to my health or my life in general because while I may not tell people on a daily basis how pants I feel, this is the space for you to know that.

If you’ve ever had Diarrhoea pains you’ll know how awful they are and last Sunday night that’s what I had.  Let me tell you now…when you don’t use your bum like a normal person, that feeling is weird!  I still have my colon and sometimes it wakes up and it decides it needs to get rid of bits and pieces that are clinging to its walls and the only way of doing that is by pooping like a normal person.  Sounds simple doesn’t it?  But god!  It takes hours, days even, and it just wipes me the hell out. 

I’d been looking forward to the bank holiday weekend all week. Three days off work, a couple of lie ins, shop for a skirt for my uniform.  But no, my bowel had other ideas.

With every hour of Sunday night and all day Monday the pain just kept on coming and I felt sick, I didn’t eat, I could hardly drink, I was cold, hot, cold, hot…

It got to 11pm on Monday night and I just couldn’t take it.  Nothing was coming out and everything hurt, all over.  With every rectal strain (sorry) Wilomena was the size of a tennis ball with the threat of bursting into flames… 

…so it was a trip to A&E.  Wythenshawe A&E, where I knew I’d be seen.

Credit where it’s due, Wythenshawe Hospital has a very civilised A&E department.  I mean, yes it was a Monday night and not much was going on and there were very few people in there, but it really was quite nice. 

Covid hasn’t made life easy and every single person in that A&E department was waiting on their own. I’ve never had the experience of going to any hospital appointment on my own, I’m lucky that I’ve always had someone with me so this was a whole new ball game. I had to fight my own corner and put my brave pants on.

I admit having a clearly visible problem probably went in my favour.  I was triaged within 20 minutes, bloods taken in 10 and a cannula shoved in ready to party.  I waited about an hour for them to get the results and after that they popped me in a little room with a bed, a blanket and pain killers and the nurse said…

“Get some rest and the surgeon will come and see you in the morning.”

You know when you’re being looked after, you know when you’re being taken seriously and as I was lying on this really awful bed, completely alone and no idea what was about to happen to me my bum hole opened the flood gates and released this horrendous gunky, sludgy, chunky stuff that looks like brain matter and the stench! I am so sorry; I have never encountered a dead body before but I’m pretty sure something died inside me at some point because that was the kind of smell that was coming out of my bum crack!

As well as the pain, the confusion and by this time the delirium, all I could think was…

“…what time should I call my manager and tell her I can’t come into work?”

At 7am (ish) the door to my little room opened and in walks the surgeon –  Dr O’Connor.  He works directly with the surgeon who formed Wilomena – Ms Telford, so this felt like a good start!  A really good start.  He was young, but that was okay because we’ve been through this before so it’s all good.  He had read my notes and he knew all about my stupid GP and the ridiculously long wait for a face to face appointment with Ms Telford and he said…

“…I’m so sorry, it should never take this long for a face to face appointment, even with Covid.”

I already loved him!  The first thing he wanted to do was whack my bag off and take a peek at Wilomena to get to the root of the problem.  Just like that!

“Let’s take your bag off and see what’s going on in there.”

So standing in my Sainsbury’s pyjamas and my beehive hair that’s forgotten what a brush looks like, and baring in mind I’ve just excreted the brains of a million corpses that have been lying desolate in my colon for god knows how long, I take off my bag. 

True to form, Wilomena decided not to play ball this time and she looked like a perfectly normal stoma.  Seriously!  Of all times to mess around, she chooses now to look sheepish!  But Dr O’Connor wasn’t phased.

“Let’s lie you flat and take another look and see what’s going on with the other end too.”

If you have read my first blog about what I had to endure in order to get Wilomena, you will remember the ridiculous tests that I had to have.

Here’s the link if you want to remind yourself: http://blog.bipolar-with-a-stoma.co.uk/2020/12/05/wilomena/

As a result of those tests I have lost any feeling of embarrassment when it comes to being examined.  When you’re desperate for help, you end up accepting that help regardless of anyone’s gender, so when the nice, young, male doctor had to pop his finger up my bottom I didn’t even flinch.  At this point I was more concerned about the need to brush my hair than I was anything else. 

But the best thing!  The best thing in the whole wide world was the moment when he had to insert his finger right though the hole of Wilomena’s little mouth.  It didn’t hurt.  Not at all.  Despite what you might think, having part of your insides on your outside it doesn’t actually have any feeling.  You can cut your leg and it hurts but squeeze your intestines and you won’t even flinch.

I only noticed some kind of feeling when he found the problem…

I can’t for the life of me remember what the medical term was that he used but when he was having a poke around he found a twist or a knot in part of my small intestines which has prolapsed and is pushing against Wilomena.  This makes her bulge and stick out and explains why she’s so deformed.

So I need another operation to fix it and possibly another stoma formed (don’t worry, I’ve already decided on a name) and along with that I’ll probably need my colon removed.

Don’t be sad.  Please don’t pity me and don’t tell me you’re sorry for me because right now I’m not sorry.  Just like it was four years ago, this is a solution to a problem.  It’s not great and it’s not ideal…but you know what?  It’s life, it’s my life.  Don’t get me wrong I am angry at my stoma nurse, I’m insulted by one GP and fuming with the other and if me and Covid ever meet on a night out I will throw a drink over its head for messing up the world.

Now you might be wondering what choking on a carrot has got to do with Wilomena and a dodgy colon?  Well, I came home from hospital on Tuesday morning and I’ll be honest, it wasn’t pretty.  I was pretty much a vegetable on the sofa the whole day and more or less the same on Wednesday.

I hate having to take any time off work and I kept thinking…

What about the petty cash?

What if they run out of paperwork in the office?

Who’s going to do the order?

What if something needs reporting like a broken sink or a dodgy doorknob?

But my other worry was I had some training on Thursday and I didn’t know that it was open to me because I’m just the admin so I was really really happy when my manager put me forward to do it. So I went. 

Admittedly I felt a bit out of my depth.  I am not a medical professional and maybe as an admin I should know my place and stay in it, but sometimes in life we get opportunities that come our way and no matter what box those around us think we should stay in; it really is up to ourselves to decide what opportunities we think we might benefit from.

Usually I hate any kind of training that’s out of the workplace because there’s always a break and a lunch break and I’m always left to my own devices but this was a little different; I knew all the people on the course and I was included and it was really nice but…man I felt lousy.  My back hurt, my stomach hurt, Wilomena was back to her tennis ball self, I was hot and cold and I really didn’t want to eat any food…but you know when your body says…

“…I know you don’t want to but you really need to just feed me something…”

…so I bought those little carrot sticks with the houmous dip and I was actually really looking forward to them – I know that sounds weird – and when the lunch break came around I decided to just stay in the room and munch on them.  Then the course leader, who I really like and really respect and would have really loved to have a conversation with, asked me a question just as I put the first carrot stick in my mouth and a tiny tiny tiny tiny, I can’t stress enough how tiny this piece of carrot was that lodged itself in my throat and I just started choking – not like Heimlich choking but bad enough to need to leave the room and try and cough it out. 

The toilet was right behind the room so I didn’t want to cough like a Covid patient, I wanted to cough like a lady and not like I was coughing up a demon or another dead body, but attempting to do it discreetly just made the whole thing worse.

By the time I was able to go back into the room, red eyed with a voice like a T-Rex people were filtering in and word of my choking catastrophe was spreading.  Not only was it spreading but the discussion was going on for what felt like a really long time.

All I could think was…

“I’ve just spent a night in hospital.  I’ve just had a really young doctor stick his fingers up my jacksy and then down the hole of my knotted stoma.  I need my colon taking out, I don’t know when that will be and until that happens I’m going to have to put up with pain and bits of dead people falling out of a bum hole that forgets how to work!  So in the grand scheme of things…choking on a carrot is the least of my problems right now.

That was the first time I felt sorry for myself.  Only a little bit, but I did, I felt sorry for myself.

I went back to work today and I got on with my usual job.  I still feel a bit pants and when anyone asked me where I’d been I did tell them the truth.  People said…

“Why haven’t you said anything?”

“You must be in a lot of pain.”

“I didn’t realise it was that bad.”

The truth is my stoma pain isn’t anyone else’s pain.  I don’t like to whinge, I don’t like to complain and as a result of that people have no idea.  I do exactly the same with Bernard.  When I’m having a Bipolar episode no one knows because most of the time I can appear completely normal. 

I have this – opinion, I guess – that me complaining or airing my health problems makes no difference to anyone else’s life, they can’t do anything about it so why tell them? I would rather concentrate on their pain. I don’t for one second want people to stop telling me how they’re feeling because you do matter and your health matters to me and I will do whatever I can to make you feel better.  I will, that’s a promise.

I didn’t intend this blog to be so long but maybe I needed to get it out more than I thought.  Maybe I need to acknowledge my situation and accept that I need to take better care of myself and just let people help me if they really want to.

I wish I’d come to this realisation weeks, months, maybe even years ago…

...before choking on a carrot…

Dedicated to Dr O’Connor. You may never see this and you may never see me again. But thank you for doing something. Thank you for being the only medical professional who took action and didn’t let me down. Me, Wilomena and my colon will remember you with great fondness, always.

Share:
Reading time: 15 min

By my bed I have a book I call my “Bedtime Rant Book.”  It was my mum’s idea, thanks mummy.  Whenever my thoughts plague my sleep she has always told me to write them down before I go to bed in the hope that it will free up some space in my brain so tiredness can take over that space and ensure a restful sleep.  You know what?  It works!  Well, most of the time; some of the time. 

Thanks go to my good friend Premal for picking this up for me in Thailand…

Sometimes it’s nice just to write down my thoughts and the next day look over them and say…

“Yeah, today isn’t as bad as yesterday.”

Or

“Today is worse than yesterday, but now I know why.”

Or

“Damn I’m such a drama queen!”

Or

“You were right to be mad Kat! Watch out world there’s a hurricane a comin!”

I know I’ve written some raw material here on this blog, probably some of which has never left my lips before because sometimes writing is easier than speaking.  Sometimes when I’m “not so good” I will send Matt a text message from a different room in the house to tell him I’m not coping, sometimes that’s just the way it rolls.

The piece I’m about to share I wrote last weekend and I know it’s raw and I know it’s close to the bone but it’s something I want to get out there, maybe people can identify with it, maybe it will just open a few eyes; or maybe…maybe it will just smack me in the face as a massive error in judgement. 

Whatever this turns out to be, it will be exactly what I promised this whole blogging idea to actually be…

My truth, my undeniable misfortune and if it’s not a lesson I can learn from myself, maybe it will be a lesson for others to not be afraid of the darkness; because the only way to face any kind of darkness is to admit that it’s there.

It’s common knowledge by now that November 2019 was the start of a ridiculously long Bipolar episode.  Ten months that thing went on for!  It wasn’t my worst but hell it was lengthy, I won’t bore you with dates, times and symptoms but, when I was all caught up in my musical delusions and my sleepless – and I mean really sleepless nights, to the point where watching Kenneth Branagh’s four hour long Hamlet was a decent way to pass the time – I had only one other vice…

…my creative brain…

My brain tells me what to think, the creative side of it tells me what to write for one reason and one reason alone…

…survival.

From the 11th May 2020 until this very day, and probably for some time to come; “Dancing in Puddles” has been my air, my release and as cheesy as it may sound, my saviour.

I don’t know what I had in mind when I started to write it.  All I know is I was resurrecting a bunch of characters from my childhood novel and recreating the pain I inflicted on them back in 1994.

In 2018 I spent a year writing a novel with another group of resurrected characters that I made sure felt pain and turmoil.  But when I finished it I needed more.  It’s the burden that comes with having a creative mind.

Back in 1994 I called my novel

“The Waste of a Person”

…because that was me. 

I thought if I wrote about a girl who tried to kill herself multiple times, then I wouldn’t want to do the same.  When my life didn’t get any better I renamed it, quite simply…

“Life”

…and I made terrible things happen to that girl because I couldn’t do them but I could write them.

Poor Shebah Hamilton (my lead character) and I guess her friends too, I may have given them a rest for twenty-two years but bringing them back to life was easy.

Last year I felt pain and I didn’t know how to channel it and writing was my only vice.  I’ve had virtually nothing that I gave to Shebah.  My dad isn’t dead, he didn’t have cancer and he wasn’t killed by my mother with a pillow over his face.  My mum didn’t abandon me at the age of sixteen and my older brother didn’t follow suit because I don’t have one.  I haven’t tried to kill myself eighteen times even though I may have wanted to, maybe even planned it.

I gave Shebah a group of male friends because when I first created her I didn’t have any.  I gave her visible panic attacks, horrendous scars and a long sheet of silky, beautiful hair because mine is thin, frizzy and turning white.

She might not know it but she’s beautiful and I’ve always wanted to be able to sing so I gave her the voice of an angel.  She’s a performance poet and performs like an OSCAR winning actress who can give Meryl Streep a run for her money.

I brought Shebah back to life because even though I’m happy, sometimes I’m still in pain…

I’m in pain because I’m not normal.  I wish I was but sometimes life is just too hard.  Sometimes all I want to do is close the door and walk away because trying to be a better person just isn’t possible.  Sometimes changing my behaviour is just too difficult.

It’s hard to explain to people how hard it is trying to be normal or trying to make life less difficult and believe it or not when you’ve achieved the things people said you never would; trying to keep up the mirage of normality is even harder than it is living up to the expectation of nothing.

Sometimes writing is like taking a pill for something that hurts.  It’s like paracetamol for my words.  If I have a bad day so does Shebah.  I can make her cry at the drop of a hat because there’s no plan, no plot, no formula.  If I hurt so does she.  I can give her a panic attack on her best day and I can make her fall to her knees in invisible agony because that’s just how I feel inside. 

“The waste of a person”, “Life” kept me alive in my teenage years and the I guess “Dancing in Puddles is my survival technique right now.

I started it because no one will see it.  I write it as an outlet.  I feel it because sometimes I think, when I’m gone maybe someone will look inside the chest my notebooks are housed in and they will understand how hard it is to constantly feel abnormal in a normal world.

People always say…

“…what’s normal?”

…but come on, we know the simple answer to that question.  Normal is acceptance.  Normal is doing the things you’re supposed to do.  Normal is achieving the things that are laid out by everyone around us.  Normal is not feeling different.  Normal is not having to make a up bunch of characters to inflict emotional torture on to because you can’t deal with your own.

When I started writing “Dancing in Puddles” I wasn’t sure how long it would be, but so far it’s filled nine notebooks and it will probably fill many more.

At this point, if it’s the only piece of fictional writing what comes out of my pen then that’s just fine and I’ll attempt to give off the illusion that sometimes life is only slightly difficult and I get through it by only getting my toes wet…

…but that’s not true.  Sometimes I’m not dancing in puddles…

…I’m drowning in them.

When I speak to an audience I always end with the same sentence…

“…life doesn’t end because of mental illness; life starts the second you take control of it.”

In our lifetime there will always be quicksand that we have to wade our way through.  Some of us just get a raw deal but it’s not about sinking, it’s about how we deal with it that really counts.  Even on my darkest days, I try to remind myself of that one sentence because I know that it will pass and it will pass because every day, every single one of us has a…

…dance in puddles…

Dancing in Puddles

Share:
Reading time: 7 min
I’m putting this image here now because even though this blog is hard to write, there is light at the end of it…

It’s June, it’s summer, it’s 22 degrees outside and it’s hot!  For most people it’s the time to whip off your top and slap on that suntan cream and bask in the glory of that big fat ball of fire in the sky.  

Summer makes people smile, it brings them together and it’s a chance to get our legs out of our jeans and give our arms the ability to break free of the sleeves of our woolly jumpers because nothing beats the feeling of the sun on your skin.  It’s glorious…

…unless you’re a self-harmer…

I’ve never written about this subject.  I’ve never documented it in a journal or gone into the intricacies in one of my presentations.  It’s a section of my life that I’m not proud of but it’s a part of me that I can’t hide.

I’m not looking for sympathy or even understanding, especially when it’s something that I don’t fully understand myself and I can’t pinpoint a reason or event or a pivotal moment where I…

“…made the decision to hurt myself…”

…but I can say that when your life is consumed by self-hatred and confusion and you have no concept of mental illness or what it even looks like; when all you want is to be able to feel something, then pain is sometimes the only thing that makes sense because how can you feel joy when all you feel inside is pain?

I know very little about self-harm.  I barely know anything about my own variation of it, except that in the moment, in those few minutes, I felt relief.  I was relieved because I could see something that hurt and I was also relieved because the pain I felt echoed the pain in my soul.

In my early to mid-twenties I would dip in and out of the self-harm habit, just like I would dip in and out of hospital.  When Bernard the Bipolar brain was medicated and caged within the realms of sanity I didn’t feel the need to hurt myself.

When I look back on my self- harm history I can only describe it as moments of madness that made sense at the time.  It was desperation, it was like drowning in a lake of cement and it was the one thing that pulled me out.  It was a few minutes of blind self-inflicted rage, self-pity and a way of pleading with life to just stop! Stop what it was doing and just make sense again.

In the moment I didn’t think of the future.  I didn’t think to myself…

“What do I do when its sunny outside and everyone is taking their tops off?”

“What do I do when I want to roll my sleeves up to wash my hands and there’s someone stood next to me who doesn’t know I struggle?”

“What do I do when I meet a boy and he sees these hideous scars?”

In the moment I didn’t think…

“What do I do when I get a job and there’s no aircon in the office and I’m frying like an egg.”

I didn’t think…

“What do I do in eighteen years’ time when I get another job and I’m working with patients who have done the same thing but they have no idea that I am anything other than Admin Kat?”

In that moment, at the age of twenty I didn’t think of the future; I didn’t think of the future because I didn’t think I had one. 

Contrary to popular belief self-harm was not a form of attention seeking for me; how could it be when I had to go to incredible measures to hide what I have done to myself because no-one really understood it.

It’s been long sleeves at social gatherings so people don’t stare.  I put my arm behind my back when I’ve been at the end of a row of people and a photographer makes a spontaneous appearance.  I make up elaborate and ridiculous lies like…

“I used to be a Piranha fish tamer.”

“I had an altercation with a seriously angry cat.”

“It’s an unusual birthmark.”

“It’s a new form of tattoo art.”

(No one believed any of them, can you believe?)

Mr Piranha Fish

It took me years to find the courage to roll up my sleeve at my last job.  In the end the defining moment was the office was just to damn hot and I couldn’t take the heat.  People stared, they whispered, some even stopped speaking to me for a while; one person refused to make me a cup of tea because they didn’t want to touch my self-harm infected mug.

I had a friend once who told me I was in the running for being her bridesmaid but she had to make a decision on what would look better on her wedding pictures.  Unfortunately the dress she’d picked out for the bridesmaids didn’t accommodate a hideously scarred arm.  I had another friend who told me it would be better if I could cover my arm so that she wouldn’t have to explain the state of it when we were supposed to be having a nice evening out with her friends.

Once I tried to explain to someone how difficult it is to keep up the act of normality when life is constantly throwing curveballs in your way to make it less normal.  They said…

“Well you made that choice, now you have to live with it.”

They are of course right.  Whatever spin I put on this, eighteen years ago I made a decision to hurt myself and that decision has affected my life ever since….

But…

Had I not made that particular decision, the only one I was left with would have been a whole lot worse because…

…I would not be here to tell the tale.

Twelve years ago I may have braved the office with my naked arm but when I started public speaking in 2014 everything I did to every single audience was done in long sleeves.  I would sweat, my skin would itch and I would stand in front of the crowd and tell my story but I would never bear my arm. 

Long sleeves

I was ashamed.  When you’ve spent so many years being made to feel like a leper because of the things you’ve been through and the decisions you’ve made, it’s difficult to get out of that habit.

On the 5th May 2019 I went to see Rose McGowan do a reading and interview about her book Brave.  There’s something about Rose McGowan that I’ve always admired.  When she was in Charmed I wanted her hair.  When she became a voice for all genders in the Me Too movement I admired her bravery and her courage.  She’s someone who has suffered but she’s never given up and that’s what I admire the most.  She uses her pain to give others the courage to carry on.

The Lowry – Salford

Anyone who worked with me at the Edinburgh fringe festival will tell you that I can talk to anyone, actually everyone who knows me will tell you that, but my Edinburgh friends will tell you that when it comes to talking to celebrities I shrivel up and die and I turn into a ridiculous gibbering idiot who can’t form sentences… and for a public speaker it’s not a good look.  But in 2019 I was not going home without my copy of Brave being signed by Rose McGowan.

So I stood in a queue for 45 minutes, which didn’t feel like 45 minutes because I spent the entire time texting my mum asking her…

“What the hell do I say?”

It was a warm day and I’d walked into the Lowry dressed in a woolly jumper and my winter coat, so coupled with the fact that I was nervous I was also getting that jittery sweaty look…but let’s cut to the chase…

I got to the front of the queue and this beautiful person was sat in front of me and she asks me what my name is and we start talking about Greece and where my family is from because she’s just been to Greece and then…she clocks my arm!  She clocks it because in my Sweaty Betty panic I rolled up my sleeve for some temporary bare skin relief but I forgot to roll it back down before I was stood in front of her.

In that moment I had two choices, tell her the piranha fish story or…

…just tell her the truth.

So I said…

“I have Bipolar but I’m a public speaker now.”

She said…

“Do you show your scars when you speak?”

I said…

“Never.”

And I will always remember her reply because it was a lightbulb moment.  It was like a rough sea becoming calm or the clouds parting after a storm.  It was peace resting on a troubled soul.

“You should show them because you survived them, you should be brave.”


With tears in my eyes I nodded and I said…

“I will, I’ll be brave.”

And she said…

“I’m proud of you, I’m so proud of you.”

I wish I had a picture of myself being wrapped in Rose McGowan’s arms when she said those words, but even photographic evidence can’t explain what I felt in that moment.

It was validation from a complete stranger.  It was permission to stop being ashamed of my behaviour and a reason to move on from it. 

I look at my arm sometimes and… guys it’s a mess, so some days I am still ashamed but other days I think to myself…

“Damn right Rose, I survived them!”

So now in my presentations I talk about it and no matter how cold it is in the room I whip my top off or I roll up my sleeve and I strut that stage and do what I’ve always tried to do, I try to make people proud.  I try to make Rose proud.

Short sleeves

I’m not saying any of this is easy and sometimes when life is really difficult and things don’t make sense, the urge is still there and I’m not proud of that; but I am proud of the fact that I manage to resist that urge.

These days I try to write it out.  I try to write blogs or I rant in my designated “bedtime rant” notebook.  I write stupid fiction where I make the lives of innocent characters miserable because it makes me feel better, it’s a release.  I have an abundance of notebooks in my little library that are filled with the deaths’ of the most beautiful people of my own creation but they die because they are part of me, parts of myself that I couldn’t save at the time.

At work I was chatting with the drama therapy student and he asked me what write I about, was it romance or sci fi or crime? That kind of thing.  But I couldn’t give him an answer, not properly.  I couldn’t give him a simple answer because there’s more to my words than just a genre.

Since the age of eleven my words have only ever been a way for me to cope with the world.  They give me air by suffocating my pages.  My characters represent the parts of me that are still here and the parts that are gone.

As I’ve got older and hopefully wiser, I’ve found ways to channel those feelings of self-loathing, sometimes I’m not always successful but writing this particular piece right now has helped me understand the way I’ve been feeling. 

I’ve spent the last four hours writing this – believe it or not – and now I know exactly what I write about…

I write about darkness and I write about light, because…

…in order to survive, I write about pain.

Now I am brave…or try to be.

Dedicated to Rose McGowan, although you may never see this you gave me the courage to be brave.

Share:
Reading time: 10 min

A few years ago a friend gave me a tiny plant pot holding a stem with a leaf attached to it and told me how to grow it.  The same friend gave me a Venus Fly Trap for my birthday once because I’d always wanted one.  I did my best, I did everything I could for it, but there was just no way it was going to survive (I sound like a surgeon when they’ve lost a patient on the operating table).  I am not green fingered in any way but lucky for the leafy stem it had a better start in life.  In the office there were two of us watering and nurturing the plant we later named Penny Plant.  The number of stems increased and more leaves came to life, it grew so well that it needed re-potting so I brought Penny Plant home so mum could re-pot her for me – you didn’t think I could do it did you? Really!

After that Penny never made it back to the office, she found a new home and over the last…I don’t even know how many years, we’ll call it seven…Penny Plant has thrived!  The other day I looked at her and I said to mum…

“Is that the plant that Premal gave me?”

When she said…

“Yes”

…I took a picture of the plant and sent it to my friend.  He has no recollection of ever giving me the stem with a leaf on it, but he did say one thing…

Penny Plant

“And there’s your next blog title.  It all starts with a little leaf and a stem.”

I haven’t written a blog for a week or so because I felt like I’d run out of steam with it.  There’s only so much you can write about before people start thinking…

“Oh god, not another soul sucking, dramatic diatribe about the trials and tribulations of having an unfortunate brain and a bowel that doesn’t give a crap, literally.”

So, no people.  This one is different, this one is about how lucky I am and how I should remind myself of this because when life feels unfair I forget that it could be so much worse.

I’ve done a fair few blogs now and I’ve dedicated all of them to people along the way who I respect and love and I want them to know that for whatever reason they have carried me through times when my head is contemplating sinking beneath the water.

Up until now there’s one person who, obviously I’ve mentioned, but I haven’t dedicated a blog to and maybe now is the right time. 

Life before varifocals

I met Matt at the tail end of 2013.  I think I told him about Bernard the Bipolar on our third date.  I expected him to either not know what it was or look horrified.  But I got neither reaction because he knew what it was – well, he knew what the word meant.  No one really knows what Bipolar is until they’ve witnessed an episode unfold before their eyes because no two Bipolar people are the same.  So the fact that he knew the meaning behind the word was brownie points for him and a relief for me because I didn’t have to do the generic spiel straight from Google.

In 2016 we’d known for a while that I was going to be crapping in a bag pretty soon after we got married and to be honest I only asked him once if he was going to be okay with this – because obviously I was going to look slightly different, but when you’ve had self-harm scars decorating you left arm for the last 18 years, a poo bag under your jumper is the least of your worries.

In my eyes it was a case of…

“This is how it is…deal or no deal?”

…turns out it was deal.  We had no idea what was in store for us, we knew nothing about ileostomy bags or stomas or anything to do with pooing in a bag in general because this was a physical ailment, this was unchartered territory; so we did what we’re good at, we made it light hearted and it worked.

Now with that out of the way let’s get one thing straight.  This is not about being the Bipolar one in a couple.  This is not about being the one who can’t control her farts because when you have a stoma it’s just not possible. This is more than that because I am a person and being Bipolar and having a stoma does not make me who I am.  They may be the reasons why I am a public speaker and why I write a blog but I am not a public speaker 24/7 and if I wrote more than one blog a week I would get really bored, really quickly and so would you. 

This is about the driving force behind why I do what I do and probably a big aspect of who I am today.

May be an image of Matthew Edgington
He didn’t like the hat

It was 2014 when I decided I wanted to be a speaker.  It was in my head for weeks and the need to explore the possibility of doing it was like a ball of fire in my chest.  I knew I had a voice that wanted access to the things I’d been through but I didn’t know how to do it. 

In the past I’ve had fleeting ideas of adding something into my life to make it a bit more meaningful or more exciting.  On occasion I’ve thought about joining an amateur dramatics group but pretending to be something I am not not has never come easy and I left my acting shoes with my GSCE drama exam.  I’ve also wanted to try out stand up comedy but stand up comedy is the same thing as writing a novel. 

People say…

“Everyone has at least one book in them.”

…well I’ve written many but it doesn’t make them good! And everyone can tell a joke but it doesn’t mean you’re funny.  

I usually sit on my ideas and if they pass the threshold of about two to three weeks I know I’m serious.

In 2014 I didn’t know I wasn’t going to poo in a bag so my voice was solely going to focus on being bipolar.  This was mental illness, this was before Heads Together, before the Be Kind brigade was born and it was a gamble.  I wasn’t a volunteer anywhere, I had no direction, all I had was an idea.  I’d already told mum what I wanted to do but I had a boyfriend who knew nothing about this and I was going to be standing up in front of groups of people and literally outing myself to the world – because at this point I didn’t even post on Facebook that I was Bipolar, 90% of the people I worked with had no idea this was the case so this was a massive deal, this was actually make or break because if I was with someone who didn’t approve of me speaking out about my mental illness, then who was I with at all?

I vaguely remember the conversation; I think I said something like…

“I want to try out public speaking and talk about being Bipolar.”

…I had a big spiel prepared to back up my plan so I could convince Matt that this was a good idea and this was something I should do and it was needed because back then it looked like Kerry Katona was the only female Bipolar person out there and she was making a mess of it (sorry Kerry).

It turned out I didn’t need my spiel because the first thing Matt said was…

“Yeah do it.  It’s a really good idea, someone might learn something from you.”

I remember I said…

“Really?”

He said…

“Yeah, I support you.  I’ll always support you.”

I’d already fallen in love with him after about a week of knowing him but when I heard those words it happened all over again.

May be an image of 2 people
Vienna 2016

This is what my friend was talking about with the leaf and a stem.  I had an idea, a tiny nugget, a little leaf wafting in the wind and I didn’t know if it was going to grow into anything or if it was going to flop like a bored and deflated balloon but the point is, I had someone believing in me and it was without question.  It wasn’t reluctant, it wasn’t a case of…

“Well I have to, even though I don’t really want to.”

Mental illness and poo are two of the things in this world that we’re not supposed to talk about and over the last few years I’ve been asked a number of times if my husband is okay with me doing the things I do.  Every single time I say yes and almost 8 years into us being together it’s become a no brainer.  I get offended by people asking this question because to me it’s like asking someone…

“Does your boyfriend mind that your eyes are blue?”

“Does your partner care that you’re taller than him in heels?”

“Is your husband not offended by the big mole on your face?”

…because I have always believed that whoever I was going to end up with, if anyone at all, they would love me for who I am and not the bits about me that I cannot change. 

May be an image of 2 people and people smiling

Now let’s not go painting a picture of a saint here.  Matthew is just as whacky as I am.  We spend our days irritating the hell out of each other, joking, sniping, shouting…

“You’re a poo face!”

“You smell!”

…up and down the stairs.  At night I’m certain he swallows some form of demon and he’s damn lucky I haven’t put a pillow over his face because his snoring is something so far out of this world even as a writer I have no idea how to describe it.

I hate that he drinks energy drinks and eats pre-packed burgers because one day he’ll die and when someone says…

“I’m so sorry about your husband, what was it that killed him?”

I’ll have to say…

“A can of Red bull and a microwaveable burger.”

Red Bull Energy Drink 355ml (Sugar levy applied) | Sainsbury's

We drive each other crazy and we are complete opposites; he’s a sports freak, I read books.  He’s got an Xbox, I don’t even know how to switch it on.  He likes Black Adder and Bottom and I can’t stand Rowan Atkinson or Rick Mayall.  I like Crime Drama, I’m not gonna lie.  I’m creative and I can’t explain it.  My communication is terrible and where my silence is supposed to speak volumes, I find it rarely speaks at all.

The smushy smushness of our early days dating may have fallen by the wayside but two lockdowns later we’re both still alive and no one has been murdered – yet, there’s still time my friend.  These days the best thing about life is being woken up on a Saturday morning with a cup of tea and a bacon and egg McMuffin.  It’s having pasta made for me when I can’t figure out what to do with myself and being given a framed picture of the cat the day after she died to make me feel like she’s still there. 

No photo description available.
Milly

Life is good when someone tells you you’re pretty first thing in the morning when you’re grumpy and literally look like a troll.  When your entire wardrobe is consumed by jeans and jumpers it’s a gift from the Gods when that special someone doesn’t mind that you don’t own a pair of heels and you’ve never worn mascara (sorry ladies, that’s true).  When the only opinion he has about your appearance is what your glasses look like and that’s because he’s an Optical Consultant, that’s an opinion I will take!  And sometimes it really is the thought that counts, like when you discover the genius of South Park twenty-five years too late and one tiny comment of…

“I’d love a t-shirt with a picture of Butters on the front.”

47+] South Park Butters Wallpaper on WallpaperSafari
Butters

…probes him into spending ages trawling through Amazon to find one.  And when you’re looking through your CD singles from the 90s and you discover that you’re missing one The Montrose Avenue single from 1997 and your favourite independent music shop can’t find it; it really does take a special someone to track it down on eBay for you and surprise you with it.

The Montrose Avenue ① : KENNEDY 音楽の館
The Montrose Avenue

Admittedly sometimes I feel like he doesn’t pay attention to life.  I feel like he’s not that bothered and I end up thinking that all the stuff I have on my plate, all the mayhem I have to deal with, I have to do on my own. And sometimes I discover that I am wrong.

Last week we were in the kitchen and there was some form of creepy crawly on the wall near the window…

(NB – if anyone is pro-creepy-crawly-life please look away now, this is not for you, come back in a couple of sentences)

…Matt pointed out the little blighter and in true Kat style I did a bit of a squeal and told him to squish it (I’m sorry, I did warn you).  In the next breath, as he disposed of the unfortunate creature’s carcass, he said…

“It always amazes me even with all the stuff you have to deal with and how strong you are, you can’t deal with flies.”

May be an image of 1 person
Dreaming big

Maybe my strength is my own misfortune.  Sometimes I just need looking after and I don’t know how to voice that.  Maybe it’s time I learned because whichever way you look at it, our weird and wonderful life together works and as I write the last few sentences, I have my iPod on loud and I’m listening to A Day to Remember – Everything We Need.  I would never have heard of this band had I not met Matt so look up the lyrics and you’ll know what I mean because when I can’t voice my own thoughts, I’ve always found that music can.

So despite our differences and our disagreements we are a team, we’ve always been…

“…team Edgington/Spathis”

May be an image of 2 people and people smiling

…and if life has taught me anything, it’s that big things grow from something small, it all starts off with a little leaf and a stem…

Dedicated to Poo Face…love you, you smell, Poo Bum xx

(Also dedicated to my friend Prem, thanks for the plant)

Share:
Reading time: 12 min

Thirteen years ago I thought I could make it as a writer.  I thought all I needed was someone to show me the way and I thought that way was through an Arvon Foundation course. 

Just to paint a picture of what Arvon is all about, it’s basically a house somewhere remote, surrounded by fields and farm animals and the foundation owners stick about 10 of you in there with two to three professional writers and over the course of 6 days they teach you the tricks of the trade.  It’s kind of like Big Brother for arty farty people without the cameras.  There are all sorts of writing genres to choose from so you look through a brochure, pick which course you want in which teeny tiny village, look up the writers who are leading the course and you convince yourself this is what you want; this is what you need because if you’re going to be anyone in this world, this is the path to take in order to achieve it…

…or is that just me?

It’s a funny old world Arvon.  I learnt very quickly that in a room full of people who are all different from each other you can still feel that agonising pain of being unaccepted.  I say this because, at Arvon you willingly open yourself up to criticism.  You literally hand over your heart and soul for someone to look at, analyse and then dish out their constructive opinion. 

I admit I went Arvon thinking I was pretty good at stringing a sentence together but it didn’t take long for that thought to be squashed.  It was implied that my writing wasn’t good enough.  And I was told it was too dark, too bleak and people don’t want to read something that has no hope in it. 

I disagreed, and trust me, that took balls!  When you’re staring a writer in the face who is paid to put words on to paper and all you have is a few sheets of A4 with words that reflect your own pain, it doesn’t matter that life is sometimes like that.  Life can be bleak and sometimes there is no hope – but without the money in your bank account to back up that claim, it doesn’t matter what you think, it doesn’t, because the man with the money doesn’t care.  He’s getting paid to tell you your work is unreadable and as a writer you should especially steer clear of writing about mental illness because no one wants to read about it, it’s…

“…too depressing.”

Arvon left an impression.  It was a crazy week with no phone signal, and if you can’t drive there was no escape.  Everyday I felt like I was being ripped apart by a pack of hungry lions washing my limbs down with a glass of Sauvignon Blanc and it hurt!  Man it’s painful.  I am not naive and please don’t think I didn’t know what I was letting myself in for, I did.  But I also had a dream that someone might have a little bit belief in me so that I could gain a little for myself.  

Believe it or not, somehow, by the end of the week I felt like I’d turned a corner.  I’d finally connected with the people I was sharing my soul with, I was the youngest and I wanted to be liked – who doesn’t?  I took everything that was said to me on board.  I tested out all the advice about my writing and on the final night I wrote a light-hearted, comical short story that blew the socks off all them! It did, I know it did because the applause still rings in my ears and I remember being poured a glass of wine by the writer who told me my work was too bleak to put on to the page and he said…

Image result for pouring a glass of white wine

“I think you’ve found your niche.”

You know what?  I look at that story thirteen years later and I wonder what was so good about it to change the opinion of an entire room?  What was it in those words on those pages that changed people’s opinions about me when for the last five days they thought everything I wrote was too depressing?   

The answer is simple…

…I changed.

I changed because they wanted me to.  I changed the vision I had inside my head, I changed my writing style.  I flipped the coin from heads to tails and I dipped my toes into an area that I knew nothing about.  I felt like a ham sandwich in need of cheese that’s nowhere in sight. Don’t get me wrong that applause was worth it, but when the week ended what was I left with?

A bad sandwich

The course leaders said it’s good to tweak.  If I tweaked my writing style things would be different.  But in order to tweak my writing style I had to tweak myself.  I had to tweak every part of my personality and train it to think the way other writers deemed to be acceptable. 

The only problem I have with that is, nobody tells Bret Easton Ellis to stop writing weird stories that you can never figure out because by the time you’ve read all about the yuppies on Wall Street snorting coke, you can’t remember which story Patrick Bateman hasn’t been mentioned in. 

Image result for patrick bateman

No-one tells Jilly Cooper to down her writing tools in exchange for knitting needles because old ladies should not be thinking about throbbing members! 

Image result for old lady knitting cartoon free images

And it never crosses anyone’s mind that perhaps Shakespeare isn’t the greatest writer of all time because half of his plays are bleak!  They’re depressing and there’s no hope in them because 90% of the time he kills off the majority of his characters!  You just have to look at King Lear to see that.

Image result for king lear

So I rebelled, I rebelled against the professional writers, the paid writers, the people considered to be knowledgeable and qualified to tell me I’d never get a shelf in Waterstones.  I’d like to say I respected their opinion but I didn’t, not really.  So I decided, if I wanted to write a story with characters who were consumed by mental illness, then I would. 

If writing stories about mental illness is such a bad thing then doesn’t that say something about the world?  Doesn’t that say that we should be opening our eyes and our mouths and putting pen to paper to say to the world that this exists!  And it kills people!  And in the grand scheme of things this was just one person’s, opinion so tell me where the crime is!

I’ve always believed that diagnosis is simply an answer to a question, but it also fuels the fire for stigma.  It doesn’t matter how many people have a mental illness, if you’re not talking about it, then any negativity increases, it doesn’t fade.  In my early twenties I was ashamed of my mental illness.  It was a huge part of my life that I didn’t feel I could be open about.  I could only deal with it through writing and Arvon was a sharp reminder that even then the written word still wasn’t okay. 

My mum was happy to tell people about my diagnosis. I’m not sure if it was because she’d seen me completely destroyed by it and she’d had to drive hundreds of miles across the country to pick me up on countless occasions when it got too much to cope with.  Or was it because she wanted people to know there was a reason her daughter had flopped at every angle of life and Bipolar was that reason.  Or maybe she just wanted to start off the change; maybe she was ahead of the game, I don’t know.  Whatever it was my mum should have been my inspiration and it should never have taken me twelve years to realise that…

…if we do nothing, then nothing changes.

In 2014 a friend loaned me a book…

Electroboy by Andy Behrman

I hadn’t known her for very long so I didn’t have the heart to tell her that I don’t read books about Bipolar people by people with Bipolar.  But I decided to humour her and I read the first page.  That first page turned into the first chapter and then the entire book.  I’m not about to talk about the book in detail, it’s not my story to tell, but please check Andy out, his book is on Amazon, he’s an amazing Bipolar survivor, a wonderful friend and my inspiration.  He won’t take the credit for it but…

…Andy is the reason I found my voice.

At the tail end of 2014 something in me changed.  I was becoming less ashamed of having a mental illness.  I was slowly opening up to more people in and out of work.  I’d mention it in passing, I’d “like” something on Facebook that was mental heath related.  I would post something mental health related and this strange feeling started grow within me.  It was like a burning desire to do something, I wanted to change something, I wanted something to get better!

One morning when I was getting ready for work Mum said she’d noticed I didn’t seem quite myself and she asked what it was I wanted to do.  I remember putting the milk back in the fridge and I said…

“I want to be like Andy, I want to talk about my mental health…I want to be a speaker!”

There…I’d said it.  That’s what I wanted.  Right there and then in the kitchen with half a carton of semi-skimmed in my hand, was the moment that I had to say goodbye to shame.  If I was going to speak up about living a life with a mental illness, then I had a shedload of balls I had to grow and it was not going to be easy.

My family and friends would ask me what I would talk about and I know some of their lips curled when I said I was going to be honest about my mental health.  But when they asked me what I wanted to get out of it I would have to stop and think for a moment.  Because in all honesty…

…what the hell did I know?

When you decide to be a speaker you don’t wake up on the day of the decision and think..

“…woo hoo! Yeah! I’m a speaker and I know exactly what I’m doing!”

I wish it was that simple.  I joined a speaking club where I was encouraged to do all sorts of things that I had never imagined I could do.  In everyday life I would never read aloud.  I would stammer, I would flounder and then I wouldn’t be able to breathe.  The ladies at the speaking club taught me how to pause.  If you pause you can find your breath, if you pitch your voice at the right level it takes less nervous energy and if you concentrate on the pace of your speech, the flow is easier and your audience are able follow and understand everything you say. 

Those ladies pushed me to limits I never knew I had.  They had me enter the North Pennine Area Speech Contest where I talked for eight minutes about drag queens and I came first place. 

North Pennine Area Speech Contest 2015

While I was trying to find my feet in the speaking world and I was also coming to the realisation that still so many people had no idea what Bipolar is or that in actual fact, it’s not a crime to have it or talk about it.  The day I spoke about being mentally ill at the speaking club was the day I knew my time there was coming to an end.  They were horrified.  They were beyond words – which for a speaking club isn’t exactly a great advert – they suddenly lost respect for me, maybe they wondered what they had let into the club?  Whatever it was they felt, I allowed myself to be affected by it for a few weeks before I decided to leave for good.

I was out on my own, I had no idea what it took to become a speaker let alone a good one!  And let me tell you, it is hard, it is stressful, it is nerve wracking and when you open up at a bootcamp for the first time in front of 10 strangers it’s like hanging yourself out to dry and waiting for a ten-tonne truck to come and run right into you.

I did three of Richard McCann’s bootcamps and he taught me everything I know!  How to stand, how to draw your audience in, what your presentation should look like and all of the things that you should be doing to get out there and speak to the world.  He taught me that if you don’t go looking for a speaking gig, you won’t find it, because it sure as hell won’t find you.

Today’s blog is not about listing my speaking achievements.  I don’t speak out about the horrors of having a mental illness so that I can gain praise.  In the early days I would post things on Facebook to show people what I’d done, it was a way of saying…

“Hey!  I’m bipolar and I’ve done this when no-one thought I could!”

When you have a mental illness people expect very little of you.  And when you’re constantly being told that a decent, wholesome life is out of reach and you have to accept that unhappiness is 90% of your make-up; it is so hard to turn that around.  When you feel like the only person who believes in you is you; it’s hard to make that enough.

Initially I had no idea what I wanted to achieve.  I was tired, I was bored and I was so sick of the system getting it wrong for so many people.  I was exhausted from hearing stupid and ignorant comments and using words wrong way…

“Oh my god, she’s so Bipolar”

“I’m having a Bipolar moment”

“They’re so moody, they must be Bipolar”

…because that’s not really how it works, that’s not even how mental illness as a whole works. 

I was frustrated with the media world for painting all Bipolar people with one of very few brushes…

Stacey from Eastenders

Claire Danes in Homeland

Stephen Fry – because he always looks fine!

People would ask what did I have to offer?  What could I possibly speak about that people would not only give their time to listen to but also walk away having gained something from hearing the words that come out of my mouth.

You know what?  I wasn’t sure anyone could gain anything from hearing me speak.  I didn’t even know if I had a story to tell.  I’ve never really put a foot wrong in my life.  I’ve never smoked, I stopped drinking at twenty-six, I was never a wild child; even my Bipolar episodes were low key compared to others.  I’ve never been close to death, I’ve never taken a life, I’ve never been to prison, I have never done anything worth reporting. 

What I have done, is try to live my life.  I’ve tried to never give up and I’ve tried to fight a system that needs reminding that the mentally ill are still people.

Six years in, I don’t know if I’m any good; I will never be perfect and I will always pick holes at my delivery.  I probably do the exact opposite of how I have been trained and for that I apologise to Richard.  But what I do must be working because now I have business cards, a website and a blog and not only that, but I get requested to speak and that was once a pipedream.

   

Andy taught me that the best way to speak to an audience is to think of it as a conversation and he’s right.  It’s a conversation that we should be having with our families and our friends, that having a mental illness is as normal as having a cold.  It’s just like any other illness, it’s a fight and it’s a battle to take control of in order to get well again. 

When I think about why I started this whole thing in the first place, it was never about achievement.  It was about telling the professionals who aren’t listening that they need to open their ears.  It is not okay to write the mentally ill off.  It is not alright to tell people what an acceptable way of life is according to them.  Everyone is different so how can people be pigeonholed? 

I didn’t set out to change the world (contrary to my Bernard’s belief), I set out to show people how to say…

“…no! That is not okay.”

In 2008, back at Arvon, I was proud of my bleak and depressing stories and I should never have allowed myself to change because others didn’t feel the same way.  Nobody ever asked why my stories were so dark.  No-one ever took the time to wonder if there was a deeper meaning to my miserable paragraphs.  Maybe they weren’t interested, maybe darkness is something we should avoid at all costs.  I don’t know.  But I do know that change is inevitable.  I know it happens without us even noticing and over the years, especially the last six, I have changed both inside and out. 

My writing has changed.  Everything I write now has some form of hope resting within the depressing words.  I’ve made this change because I have hope in my life, where once upon a time I had none.

At Arvon people said tweaking yourself was the right path to take to gain success…well?

Consider me tweaked…

but it’s not because of you … it’s because of me.

Dedicated to my good friend Andy. You gave me the strength to get started and taught me never to be ashamed of being Bipolar. One day when the world is a safer place I hope we can share a stage and tell our stories together…

Share:
Reading time: 16 min
Band 2017

When I go to Marks and Spencers I usually have a list and I have to stick to the list or I’ll just go wild and buy stuff that I don’t need.  As you can imagine, in M&S it’s virtually impossible to obey the written command of a shopping list and whilst I may have entered the shop aiming for a pizza, four frozen baked potatoes and a bag of fancy apples, I usually come out with those items plus a box of biscuits, a bag of Percy Pigs and a chocolate lolly for my niece.

In Waterstones I will go in with around five books on my list and I give myself permission to buy them because they last longer than a bag of Percy Pigs.  But more often than not I come out empty handed because I’ll look at the books and for some reason I might not like the cover, or I might not like the first five words on the front page; so I put the books back on the shelf because none of them have met my expectations and there’s no point buying a book if it doesn’t tick all the boxes that it needs to.

Image result for books on a shelf

Now this is where psychiatric life gets interesting.  When your mental illness starts to act beyond the realms of a GP’s capability a good GP will down tools and say…

“This ain’t my bag; I’m sending you to a psychiatrist!”

…and after you’ve waited between four to six months for your appointment this is where the fun starts!

Nineteen years ago the only psychiatrist I’d ever heard of was Freud – and let’s be honest he doesn’t have the greatest reputation, I mean I was at university reading Dracula and they were throwing the Oedipus Complex about like it was a football covered in cream.  In case you don’t know what the Oedipus Complex is, it’s something Freud came up with where a guy has a complex relationship with his mother and this is because he fancies her and it results in all sorts of chaos in his life and relationships (something to that effect).  It got dragged into every book I read while I was doing my degree and I now have to make a conscious effort not to give off any impression that the characters in my own stories fancy their parents because it’s a crazy idea and I will not be tainted with the same literary ridiculous brush that the likes of Bram Stoker and the Bronte sisters have been tainted with, no thank you!

Image result for freud
Would you trust this man with your brain?

Aside from Freud I didn’t know a great deal about what a psychiatrist was about.  I knew they were doctors and I knew they looked after brains but that was it.  When I got my appointment to meet my very first psychiatrist all I could think was that he was going to fix my brain and make me normal.

When you have a physical ailment and you go to the doctor or a specialist, they can look at the problem and they can see it because whatever it is is usually staring them in the face.  My bowel problem was a physical problem and whoever looked at my situation knew that there was a real problem and they tried to fix it.  When it comes to your brain all a psychiatrist has to go on are the words that come out of your mouth.

You can’t lie about constipation.  You can’t hide a lump that shouldn’t be there and if you’re in pain, or discomfort and you can barely move there’s no disguising that because it’s real; a doctor can see it.  But if it’s your brain that’s in pain, if it’s unhappy or it’s got a million things going on in there that it shouldn’t have, voices, despair, moving inanimate objects and a crazed idea about saving the world with the help of the singers on a playlist on your iPod; then those are the things you have to tell the person the system has placed in front of you and hope to God that they believe you and they want to fix you!

In 2002 I was a first timer in a psychiatrist’s office.  In the waiting room I sat and looked all the people who were there with their social workers and nurses.  Some had no teeth, some had yellow fingernails from too much smoking and some just stared into space.  I remember looking at all of them and thinking…

“Is this my life?  Is this who I am now?”

No photo description available.

No one tells you what to expect when you go to a psychiatry appointment.  A few months ago I had a CT scan and I got a leaflet in the post to tell me how it would work.  In the summer my mum had an Endoscopy and she got a booklet to tell her the exact steps her feet would take.  When I walked into the Rivington Unit at the Royal Bolton Hospital in 2002 and sat with all the psychiatric patients, no one told me how it would work, no one told me the steps my feet would take.  No one told me that it doesn’t matter if you have good days and bad days or if the only reason you managed to get dressed today is because you’ve just had three bad days and this one is a little lighter.  It doesn’t matter.  It doesn’t matter because it’s not about yesterday or last week or ten years ago.  It’s about…

how you present on the day

You have to be willing to work in that room.  You can’t be shy or secretive.  You can’t hold back and you have to be the strongest version of yourself even when you have no fight left in you, you have to find some because if you put forward a wavering claim of insanity and a psychiatrist doesn’t see it to be a convincing representation of how you truly feel, then you will walk out of that door with absolutely nothing.  No diagnosis, no meds, no referral to therapy…absolutely no help whatsoever.  And believe me, when you’ve jumped through the hoops to get to the top dog, you don’t want to leave with nothing, because you have to remember, these guys are pros.  They could probably pay off my entire mortgage in a couple of pay checks. They take no prisoners, they haven’t got time to be messing about so the least you can do is get your facts straight.

I got lucky.  My first psychiatrist was a human being.  I was in that room an hour.  I was nervous, my hands were sweaty and when I followed him into the room the first thing I said was…

“Where’s the couch?”

Image result for psychiatrists couch

When he gave me my diagnosis I cried.  Not because I was sad – I mean I was, obviously, Bipolar Disorder is not something to celebrate – but because I finally had answers for the behaviour I couldn’t explain.  I left with meds and a weight off my shoulders because just when I thought no one could help me, I’d found someone who could.

What’s the worst thing that a good psychiatrist can do?  The answer is simple…

…get a new job and leave.

You never know who’s going to take their place, it could be any old fool.  You know that saying people use when you’ve just split with someone and they’re trying to make you feel better…

“You have to kiss a lot of frogs to find your prince.”

Well for me, it was a bit like that.  My first psychiatrist, let’s call him Dr Jackson, he was amazing, but he wanted to move on and who was I to hold him back? But he left a train wreck in his wake.  Anyone who took his post didn’t stay for long and in most cases that was a good thing.

I met so many frogs.  Really ugly, dirty, smelly frogs.  Frogs who made me cry, they made my mum cry…

“You’re putting words in her mouth”

“You’re too intelligent to be a psychiatric patient”

“You’re not Bipolar”

“I don’t think you need psychiatric medication, let’s take you off it”

Maybe this is why I had so many hospital admissions, because these buffoons were confusing the situation.  Being an outpatient and having so many different psychiatrists – and I’m talking double figures, not just a couple – I was passed from the consultant to their junior.  When you see a junior doctor doing their psychiatry training you really get to see how the cogs turn.  All the questions the consultant has casually asked you over the years that you interpreted as general conversation, turns out, it’s a trick. 

Everything they ask you is a tick box exercise and the juniors haven’t quite mastered the art of the general conversation tone.  They have a shopping list.  A list I like to call the Shrink’s Shopping List…

  • What medication do you take?
  • How much of it?
  • What benefits do you claim?
  • Who do you live with?
  • What is your current mood?
  • Do you want to hurt yourself?
  • When was the last time you wanted to hurt yourself?
  • Do you want to kill yourself?
  • When was the last time you wanted to kill yourself?

They literally tick the boxes on the paper in front of them.  I don’t know if they realised that the doorstep of a folder with my name on the front of it lying on their desk already had the answers to 90% of those questions.  But they don’t look at you; they just tick, and after that they tally up your responses and send you on your merry way. 

Image result for ticking the box

I hit my head against the goal post so many times.  I was in that room less than ten minutes and ten minutes when you have to wait months for your next appointment to get another nit wit who doesn’t know how to think outside of the tick box is excruciatingly painful, physically and emotionally.

In nineteen years of being in the system I have four psychiatrists who I owe my life to.  Just like the doctors have a tick box list, I have a tick box list of my own. 

Dr Jackson put me on the right track numerous times.  Dr Ogden did the same.  I once saw him shopping in Sainsburys and he had a twenty-minute conversation with me and my mum standing next to the fish counter.  When he wasn’t my doctor and he discovered I was on one of the wards he paid me a visit and sat down with me and asked what went wrong? He was a saint and if I ever get to see him again, I owe him a fish.

In 2011 I met Dr Murphy.  Now this guy is my favourite.  I owe this one my life five times over.  He is the one I quote in my presentations because he put me on the path to what the pros call…

“RECOVERY”

He put me in my place.  He gave me a nurse I didn’t want but it was the best thing he could have done.  He told me there is always something else to try when it comes to medication.  He did what he said he was going to do and he gave me…

“The life I wanted and the life I deserved”

If there is one person on this earth who I want to see me strut my stuff on a stage, it would be Dr Murphy.  Because of him, I put Bernard in his place and now I’m in the driver’s seat.

Strutting my stuff

In December I had my four monthly check up appointment with my current psychiatrist, we’ll call him Dr Smith (inventive, I know).  Last time I spoke to him I was in the middle of an episode and I wasn’t sleeping or eating.  While he was on leave I had no one so when I had my appointment with him months later I told him all about losing my job, redundancy, finding a new job, starting a new job and he said…

“…and you did all of that while you were ill?”

I said…

“Yes.”

He said…

“I am proud you’ve been able to do that.”

No psychiatrist has ever said they were proud of me and his words warmed my heart.  When you’re a psychiatric patient quite often you’re labelled as being at the bottom of the barrel, some professionals see you as a no hoper, there’s not much they can do with you and you have two options…

Crumble and die

Or

Prove them wrong.

I went for the second option.  Option one was never really an option.  I don’t admit defeat easily. 

On the first day of my new job I was shown around the offices.  Bearing in mind I haven’t been an inpatient for ten years it took me a second to realise the finance office used to be the reception of the locked ward I once spent two months of my life on and from the window while I wait for the girls in the office to count out my petty cash I can see the room I used to sleep in.  I can’t describe the feeling. 

Every time I look across at my old room I see a version of myself that was lost and had no idea what the future would look like.  I never imagined I would get a grip on Bernard.   When Dr Murphy would challenge my grandiose ideas I would challenge his questions and my family and friends would look at me and wonder if I was ever coming back.

In March last year, eighteen years after first meeting him, I saw Dr Jackson.  I sat in his office and told him there was alien being in my brain with superpowers and I was waiting for it to give me the instructions on how we were going to save the world (this is just before Corona wreaked havoc in the UK).  He found the problem and he set the wheels in motion to fix it and once I felt better I thought…

“…one day I will show him who I have become.”

On Wednesday I walked across the hospital to take a document to my senior administrator.  I knew he worked just down the corridor and every time I make this journey I walk past his office and I think to myself…

“…one day he’ll open the door and he will see me.”

The senior admin knows my past, she knows Dr Jackson has been my psychiatrist and in passing she mentioned my name and he passed on his best.  There is nothing nicer than being remembered but when you’re a psychiatric patient you never know if you’re remembered for the right reasons.  When I took the document over I phoned my mum for a chat on the short walk I said the words…

“I’d love to see Dr Jackson when I’m doing something like this.”

In the office I was looking at a spread sheet when the senior admin tapped my hand and nodded towards the door.  Fate works in mysterious ways and sometimes you really do get what you wish for. 

Every time I come out of an episode I am embarrassed. I am ashamed of my behaviour, my words, just Bernard in general and it can take months, years, forever, for that embarrassment to fade but when you’re stood in an office with the secretaries for all the Psychiatric Consultants in the hospital and you look up from that tapped hand and one of your most treasured psychiatrists is standing in the middle of the room and he waves and asks you if you’re okay?  There’s no other feeling like it. 

I was having a tough day on Wednesday and seeing Dr Jackson gave me a lift I didn’t think was possible.  It must be nice for a consultant to see a patient go from the bottom of the barrel to having a job in the very area where they’re still a patient, but let me tell you now, it is the best feeling when you realise all your hard work has paid off and you really have proven all the terrible consultants wrong and no matter how small your achievement is, it’s still an achievement. 

In that moment I felt like a success story, for me and for him.  It’s a sign that he did a good job with me and I did my best with the tools that all of my favourite psychiatrists have given me. 

May be an image of Katerini Edgington-Spathis

The shrink’s shopping list may be an abundance of difficult questions and there is no right or wrong answer, but sometimes it’s not what’s on the shopping list that matters…

…it’s how you do your shopping.

Dedicated to the four psychiatrists who saved me and still do to this day.

Share:
Reading time: 14 min

*All names have been changed where needed*

No photo description available.

Ever heard that saying…

“What doesn’t kill you, can only make you stronger.”

Sometimes I think the people who say this are the ones who have never had anything in their lives that has set out to potentially kill them.

Those words, are they supposed to be comforting? Are they intended to give us hope?  Hope that maybe the bad days are behind us and now we can look forward to a peaceful and tranquil life?  Or are they words we use when there’s nothing else to say and we just want to make someone feel better?   

I bet you think I’m talking about Covid, but in the words of Alanis Morrisette that would be…

Alanis Morissette updates Ironic for 2015 as she admits song's lack of  ironies | Daily Mail Online

Today I’m writing about something I don’t usually get the chance to talk about, even in 99% of my presentations I don’t get the chance to go into any detail about it so maybe it’s time.

What am I on about? 

Well, when you don’t look after your mental illness, when you haven’t learned that making small adjustments to your everyday living can lessen the chances of a fully-fledged Bipolar episode; then the result – for me – is a strongly advised stay in a psychiatric ward…six times over.

When I do my presentations I have a limited time to tell my story. There are certain things people want me to address so I pick out the bits that are relevant for that group.  I always touch on my hospital admissions but I never really get the chance to go in to any detail about them, my audience knows I’ve been in hospital and they know how many times but they don’t know anything else about it.

In 2019 I got the chance to go up to Dundee and speak to a group of students studying Psychology and training to be psychiatric nurses at Abertay University.  It was my dream gig!  It was one of the top five on my “speaking bucket list”.  This was my chance to tell them the truth and hope that part of my story would promote change in the field they were going into.  I wanted them to right the wrongs that had been done to so many people I know and change the system because they were in the perfect position to do this.  So when I was asked to speak for an hour to an hour and half and told to include absolutely everything…

  • Childhood
  • Adulthood
  • Bernard the Bipolar brain
  • Treatment
  • Hospital
  • Discrimination
  • The present
  • The future

I went full pelt into it and sugar coated nothing!  I talked for 1 hour and 17 minutes and the video of that presentation is used as part of the course material in the psychology lectures.  The section about hospital is used a separate part of the course material and students are told beforehand that what they are about to watch is raw and can be upsetting.

I never, in a million years, ever thought my story would have a disclaimer; now all seriousness aside for a minute, it is kind of cool; I felt like one of those warning alerts that flashes across the screen a documentary starts…

Caters News on Twitter: "*Warning: Distressing Content* - Horrific footage  from inside a #Cambodian #slaughterhouse shows dogs being crammed into  cages before they are #killed for meat. 😢… https://t.co/JZcDjPQNVo"

But I guess this is part of my point.  I don’t get the chance to talk about it so people end up thinking that my mental illness isn’t really that bad and because I am who I am and I’m “high functioning”, then I’m probably only a little bit Bipolar as opposed to being a lot bipolar. Or…

“Like Stacey on Eastenders but not as bad.”

I love that line because whoever says is has never seen me in a fully fledged Bipolar episode. It just makes the feel better to think this way.

When I tell people that I’ve been on a psychiatric ward they assume one of two things… it’s like Jack Nicholson in One Flew over the Cuckoo’s Nest”

One Flew Over the Cuckoo's Nest | George Eastman Museum

or Sandra Bullock in 28 Days. 

28 Days | Netflix

Well, it’s neither.  What I had wasn’t the worst, but it was far from the best.

This morning I was hoovering when I came up with the idea of writing this piece and I briefly wondered, is this what people want to read?  Should I even be writing this now that I work in a psychiatric rehab unit twenty seconds walk away from the place where I was a patient?  Should I post this on the internet for all to see?  What if someone I work with reads it? 

My answer to those questions? What I’m about to write is the truth.  It happened and there’s no changing that.  I created this blog as a space for people to read the bits I don’t get a chance to talk about in my presentations.  I wanted to show others that I have worked damn hard to become who I am, I wanted people realise that appearances can be deceptive and just because a person is high functioning, it doesn’t mean they’ve always been that way.

The dark parts of my story are not to everyone’s taste and if you’d rather not read about them that’s absolutely fine, I am not offended.  If you don’t want to know what goes on behind the locked door of an acute psychiatric ward, then you’d better close your browser now because just like the blog I did about poo, this is not for the faint hearted.  This is the truth; so fasten your seatbelts because I’m about to rip the plaster right off that wound!

I’m not going to write about the lead up to any of my admissions, in fact I’m not even going to write about them chronologically because it doesn’t matter what order they occurred; after that first admission, they all look exactly the same.

*Disclaimer – I am only referring to the hospital where I was an inpatient and therefore I cannot speak for any other or service*

When you walk through the door of a psychiatric ward it is like walking into a prison, the only difference is; you’ve done nothing wrong. 

Why is it like a prison?  Because the door is locked.  You can’t get in without being buzzed in and you most certainly can’t get out. 

When the door locks behind you everything you once knew about yourself disappears.  You are no longer a mother, brother, sister or friend.  Whatever job you did on the outside world is irrelevant because regardless of you being a teacher or a lawyer or a shop assistant, it doesn’t matter, between the walls of that ward you are no longer a person, you are one thing and one thing only…an inpatient. 

Contrary to popular belief hospital is not a holiday camp.  It’s not fun and it’s not relaxing.  When I was admitted because my Bipolar high was out of control I would ask the nursing staff what was I supposed to do now?  They said…

“…rest.”

But how do you rest when you don’t feel like you need to? 

On the acute ward I was on I was stripped of everything that was a comfort to me.  I had no mobile phone so any contact with my friends and family was done in the allotted visiting times of 1-2pm, 4-5pm and 6-7:30pm when my mum came to see and brought my phone. 

I was a pro at clock watching, I would sit and watch that seconds hand go round and round until it hit the number I needed because visiting hours were like drugs! It was a hit that numbed the pain of seclusion just for a few minutes.

Everything I knew about home was gone.  In the morning I had to let my hair dry naturally because I wasn’t allowed my hairdryer.  I would ask the staff to borrow the ward hairdryer but it depended on whether they liked me enough to loan it to me.  I am not joking, there were countless times when I would ask to use I and they would say “its broken” but twenty minutes later I would hear someone else two rooms away drying their hair with the alleged “broken” dryer. 

I had no need for my keys anymore because the ward was my home. Even something as simple as a duvet is one of the most painful things to be without.  When its December and you’re sleeping under a window with a crack in it and one of the nurses thinks the five blankets you’re trying to hide under is one blanket too many, it hurts like hell to have someone take two of them away. 

If you like a hot beverage like tea or coffee and you’re used to getting up to make one whenever you feel the need then trust me, the reality of not having a kettle at your beck and call is torture because you have to wait for the drinks trolly to come out at the allotted times and if you miss it?  Well you’ll just have to wait until the next one and that could be two hours away.

When I was admitted nothing was ever explained.  Imagine when you go on holiday and you check in to your hotel and they give you a map and they say…

Checking in at a Hotel | Engoo

“This is the dining room, breakfast is at this time, the 24 hour bar is here.  You’re full board so lunch is served by the pool at this time and the restaurant is open at this time for your evening meal.  We also have room service available.  Enjoy your stay.”

No-one ever told me what time breakfast was, sometimes they’d ring a bell to wake you up, or an angry support worker would bang on every door or sometimes a patient who never slept would charge up and down the corridors shouting…

“BREAKFAST! BREAKFAST!”

God I hated her!  Her middle name should have been Foghorn!

I was never told why the door was locked.  I thought because I was a voluntary patient I would be able to come and go as I pleased but I couldn’t and I’d ask the staff why they were treating me like prisoner.  I hadn’t been sectioned so why were they treating me like I was.  You know what?  I never got an answer, because I was viewed the same as everyone else, it didn’t matter that I hadn’t been sectioned, the door was locked to stop the mentally ill from leaving and I was mentally ill.

Technically the responsibility to explain how the ward works is down to the staff, as you’d expect.  But in reality it’s the patients who tell the new patients about the do’s and don’ts of psychiatric ward life.

Believe it or not every single person on the ward is different.  We might all have been pigeonholed as the same but in all six admissions I met an array of characters.  It’s incredible how you become a tight knit group, there is no difference between you and you make the strongest of bonds with people who you would probably never meet on the outside world.

I met so many amazing people but there are a select few who so many year later I still remember.  I remember them because despite their illnesses and their life choices, they reminded me that people are still people.

I made friends with Nancy* who was a heroin addicted prostitute, she’d been raped and all four of her children had been taken away.  On the outside world it would be so easy to say that someone like Nancy didn’t deserve to have children and that a prostitute can’t be raped because selling themselves is their occupation.  On the inside of a psychiatric ward you come to realise that not everything is as clear cut as we think it is. 

We would watch Coronation Street together, we’d drink tea and we swapped life stories.  I remember she once said…

“When we get out of here we should go for a night out.”

I remember thinking there was no way that would ever happen because her idea of a night out and my idea of a night out were probably very different. 

At the time Coronation Street had an impending rape storyline and as it played out on the screen I looked at Nancy and I asked her if she was okay?  She covered her face and cried.  The staff knew what she’d been through and they knew what we were watching but no one took the initiative to turn it off when they had for other patients.  I remember putting my palm out for her and she held on to it until scene had finished.

Woman Hand Or Palm Showing Up Something Stock Photo - Image of mature,  gesture: 113303200

Nancy was an inpatient for two weeks, she never showered, she never combed her hair and she had hardly any teeth, the teeth she had left were black and rotted but every single morning when I walked into the lounge she would stand and she would hug me and ask me if I’d slept.

Justin* was on a methadone programme trying to get a grip on his Schizophrenia.  The voices in his head were always worse in the morning and as soon as he woke up he would walk up and down the corridor banging his head with his hand trying to get them to stop.

He was six years older than me and he would ask me what it was like to have a job because he’d only ever been on benefits and when his voices calmed down he showed me how to roll a cigarette because I’d never smoked one.

One morning I woke with crippling anxiety.  I was completely detached from reality, I hadn’t slept in days or eaten a meal and I was confused about where I was.  I managed to get dressed and I went into the lounge. I sat at one of the tables in the adjoined kitchen and cried looking out at the people in the room.  I recognised them but I couldn’t work out why or who they were.  All I could feel was my racing heart, the bile in my mouth and my shaking hands.

Justin walked past the table and said…

“Morning Kat.”

And when I didn’t reply he did a double take.  He knew something was wrong and without any hesitation he gave me a hug.  All I could do was cry and I kept saying…

“I don’t know where I am.  I don’t know where I am…”

He waved at one of the other patients and they shot off to get a nurse, even though I’d already been ignored by countless other members of staff just minutes before.  It should have been their job to help but instead a nurse stood over me like the grim reaper and just said…

“What’s wrong with you?”

“I can’t do anything if you don’t tell me what you’re crying about.”

Anyone who has anxiety of any kind will tell you when you’re in that moment and everything around you is so overpowering, the last thing you can do is tell someone how you’re feeling and why you’re feeling it.

He stood over me for less than thirty seconds before he said…

“Go to your room and stop crying in the kitchen.”

When he walked away it was Justin who sat with me.  He rolled his entire days’ worth of cigarettes and told me about his girlfriend.  He told me one day, when he was off the drugs they were going to buy a house because one day he would have a job, just like me.

He spent the rest of the day checking on me.  He was no professional, he had no qualifications and he had more than enough of his own stuff to be getting on with, but he still knew how to communicate with another human being who needed support.

There are patients who help others and there are patients who wreak havoc when they don’t their own way.

Irma Batters Florida, Could Retain Hurricane Strength Through Monday | Live  Science

Jane* was one of those.  On the surface you could tell she’d lived a tortured life both of her own making and no fault of her own.  It was 2011 and she had a Walkman.  She was allowed one hours leave from the ward a day and one day it was raining so she saved 20 minutes of it for later in the day when it was less wet.  She decided she wanted to take this 20 minutes when visiting hours were finished and for whatever reason the nursing staff saw necessary, she was denied exit from the ward.

Jane was livid and I can understand why, because when you have nothing and the one thing you do have is taken away the only thing you can do is respond like a hurricane so everyone knows just how ticked off you really are.

I kid you not, Jane put her headphones over her ears and switched on that Walkman and for six whole hours she walked up and down the ward shouting, screaming, dancing and making herself known.  Was it funny? No, it was flippin awful!  Did she make a point? Absolutely.  Did it do her any good?  Not at all.

The history of the Walkman: 35 years of iconic music players - The Verge

I remember Doreen was in her 70s, consumed by depression.  She didn’t wash, change her clothes or go to the toilet so she constantly soiled herself.  She was given adult nappies but her illness prevented her from understanding how to wear them.

One Saturday afternoon and there was a group of us watching American Idol in the lounge with a care worker who picked the comfiest armchair and a foot stool with the best view of the TV while the rest us sat around the sides.

Enter Doreen, fully clothed including the coat she hadn’t taken off in four days.  She was covered in poo, it was in her nails, on her hands, up her sleeves and on her trousers.  All she wanted was to ask the care worker how to put the nappy on.

“Please can you show me…”

Well this went down like a lead balloon.  The care worker looked at Doreen holding a nappy in her poo covered hands and yelled…

“DON’T BE STUPID! GET AWAY! DON’T BE SO THICK YOU STUPID WOMAN. GO AWAY! YOU’RE DISGUSTING!”

The care worker dragged her away and 20 seconds later she sat back in her armchair watching American Idol.

It was myself and another patient who tried to help Doreen figure out how to put the nappy on.  We tried to make a complaint but you learn very quickly when you’re an inpatient on an acute psychiatric ward that your word counts for nothing.

In hospital there are those who probably don’t need to be there and those who have been in so many times they might as well stay there.  There are people who are the crutch for others and then are the people who just slip through the net.

Article 38 of Hong Kong's National Security Law: Yes, they want to get you  | The China Collection

So many people on the ward self-harmed.  I saw people do it.  I saw a man slice his wrists in a corridor and then stagger through it dazed and bleeding because he didn’t know what to do.  He was told he was silly. When I self-harmed I was told I was intelligent enough to know better, but mental illness doesn’t choose people according to their intelligence.  Trapped in a moment of internal devastation, mental illness doesn’t tell you the consequences of your actions, it simply tells you what it needs you to do. 

Wayne* came on the ward a week before I was about to be discharged.  He was the same age as me and even though we’d both lead completely different lives he had one of the kindest hearts I’d ever encountered in any of my six admissions.  His depression was debilitating and always caused him to spiral into destruction, but one thing about Wayne was when he was admitted into hospital he knew it was the last chance saloon and all his focus went into getting better.

He had a girlfriend and she was the only thing he ever talked about.  The thought of her kept him going and gave him a sense of purpose, a reason to get better.  He was hopelessly in love her and all he wanted to do was see her.  The only problem was, she didn’t want to see him. 

I had 24 hours leave coming up and that morning the two of us drank tea together and he said…

“Kat, she’s coming.  My girlfriend, she’s coming to see me today.”

He was so happy and when I left for my leave with my overnight bag, he smiled and he waved and I said…

“You can tell me all about it tomorrow.”

The following day I went back to the ward and I couldn’t find him.  When I asked the other patients who were now my friends, where he was someone said.

“His girlfriend came to see him and she dumped him.”

Wayne was devastated.  The staff knew what had happened.  They were aware of the situation, they’d seen him sob when she left and yet when he wanted to go to the shop they never asked him what he was going to buy.  No one asked him if he wanted to have a chat first, so Wayne bought a bottle of anti-freeze, he drank the bottle and ended up in intensive care.  By the time I got back to the ward, he was dead.

I like to think he became an angel and found a lady angel who would love him just as much as he loved her.

What I remember most about the patients in hospital are their acts of human kindness.  Their tender hugs even though they hadn’t washed, their toothless smiles and their innocence in a world that is far from forgiving.   

Now don’t get me wrong, as an inpatient I myself am no angel.  I can be difficult, head strong and non-compliant. I hold my hand over my heart and I can honestly say that I have been that person the staff roll their eyes at.  I have been problematic, stroppy and rude. 

At the time I thought it was justified.  I believed it was the right way to behave because there was something I wanted and I needed to have it and whatever I was, it was the most important thing in the world and the staff should get it for me right there and right then…even if the thing I wanted was just a calendar so I could see what day of the week it is.

Hospital has an effect on you.  It is traumatic and it’s isolating because when you go back to your normal life how do you explain to people where you’ve been when they’re too afraid to ask because you should just forget about it and move on.

Sumo Wrestler Cartoon Japan Japanese Wrestling Postcard | Zazzle.com in  2021 | Cartoons japan, Japanese cartoon characters, Japanese wrestling
SUMO – Shut Up & Move On

How do you tell people you can’t look at the lights in their houses because they look like UFO’s and when you were in hospital you thought there were cameras hidden in the bulbs and the aliens were watching you.

How do you tell people you can’t eat food like corned beef hash because it smells like the food in hospital and it brings back the same nauseating feeling you had when you thought you were being poisoned by the staff but you had to force feed yourself because otherwise you’ll be sectioned for being non-compliant.

How do you stand in front of a crowd of people and tell your story and still think to yourself…

“…you have no idea how bad this actually was…”

…because you still don’t have enough time to tell them everything that really happened.

Abertay University, 23rd October 2019

The reality of it all is, there aren’t enough minutes to tell the whole truth of six psychiatric admissions and what I’ve written is still only a snippet. There will never be a presentation long enough with an audience willing enough to listen because the truth is never ending.  Not only that, but despite being the root cause of every single admission, Bernard will never allow me to spill the tea on all everything I went through, why?  Because some of it is just too painful and sometimes the painful bits need to be taken away so that you can move on.

After all….

What doesn’t kill you, can only make you stronger…

Dedicated to the inpatients who kept my head above the water when I was drowning…2003-2011

Share:
Reading time: 21 min

For years I’ve toyed with the idea of writing a blog but I never followed it through because there I always came up with a reason not to write about myself.  I haven’t done the travelling I wanted to do, I haven’t accomplished financial greatness and I haven’t had the romantic heartache that most girls were having from about the age of 11.  I have never tried drugs, I haven’t even smoked a cigarette, so yeah, why would anyone who has done all of those things and more want to sit and read anything about me?

Well writing a blog is a funny thing.  It’s only when you sit and start to write that you realise life isn’t always about the things I’ve just mentioned.  Its not all sex, drugs, travelling and cigarettes; you don’t have to be a CEO or have a Doctorate or speak and understand fifty languages to show people you’ve lived a life…

(NB – as I write this its 8:10pm and I’m making a note for myself to re-read that last sentence because I had a conversation with Mum earlier where I described the opposite so tomorrow I need to remind myself of this moment)

…sometimes life looks different for us, that’s why we’re…

“individuals”

In 1989 I was seven.  I only remember one thing about being seven and it wasn’t my birthday, it’s nothing to do with my friends or my toys or whatever me and brother got up to when we were playing in the street with the other kids.  No, the one thing I remember about being seven has to be the biggest discovery that no other seven-year-old can possibly have discovered.  It was a discovery that was both entertaining and an escape.  It played out like a gentle hum in the back ground of my younger years, it mapped out my teens, it created an unbreakable connection to one very special man and in 2016 a life long dream happened in a way I never imagined possible. 

What was the discovery?

Coronation Street

I’m sorry if it’s not what you expected and by all means log off the blog and I won’t be offended but if you are curious to know what the hell I’m on about then take a seat and I’ll tell you a story…

One night I switched on the TV (this is back when I was seven by the way) and the police walk into a house and tell a woman her husband has been stabbed and he’s died and obviously the woman is devastated but the most gobsmackingly astonishing moment of the scene is when the camera pans behind her and the son of the dead guy is listening on the stairs.  Shock horror.

Well I was gripped.  I didn’t know what this was.  Who were these people?  Who was the boy?  Why had the guy been stabbed?

The following day I went to see my grandparents and I was excitedly retelling this story to my grandad who informed me this little gem of televised discovery was Coronation Street.  I remember him filling me in on the characters and the storylines and he called it Corrie.  That in itself was just pure genius. 

When I was a kid I was lucky enough to have a TV in my bedroom.  Back in the 80’s and 90’s if you had a TV in your room you were royalty.  Well I didn’t feel like royalty but I got to watch Corrie whenever it was on and the next day I’d sit by my grandad’s chair and we’d talk about it and I’d sip the incredibly sweet tea from his mug that was as big as my head (I think he put about six sugars in there when I was really young) and I’d feel alive and it was a moment we shared all the way up to when he died in 2005.

My grandad was a saint, that’s how I felt.  He was the most beautiful man I have ever met in my entire life and I mean no offence to any other man in my life but even the characters I created in the stories I wrote and still write, were never a patch on the man my grandad was.

I left home at 18 to go to university and this time I had no TV with me.  Every day at 6pm my grandad would ring my mobile and he would read to me the notes he’d taken from the last episode of Coronation Street.  When I moved to Edinburgh to work the Fringe Festival we would work our phone call around my crazy shifts.  When I was in hospital with a crippling bout of Bernard the Bipolar my grandad would find all the change he had in his house and give it to me so I could call him on the pay phone on the ward and he would read every episode of Corrie to me so that wherever I was in the country or even out of my mind, I never missed a single thing that happened on Coronation Street.

December 2016, I’d been married for about a month, we’d been living in our house for just over a year, I was a Volunteer Employment Ambassador for Bipolar UK and I’d been doing my public speaking thing for almost two years but there was nothing much to shout about.

I have no idea where I was when I got the call but I was definitely in a car when Sandra from Bipolar UK called me and asked if I could go to ITV at Media City with her on Friday and meet with some writers who were doing a storyline with a new character who has Bipolar.  I asked her which soap – casually, obviously – she says…. Yeah you guessed it…

Coronation Street

Well as you can imagine, I lost all sense of decorum and any volume control on my voice completely went off the scale but, seriously! Don’t throw Corrie into the ballpark and expect me not to throw it right back out! Please.  But then she says…

“Now you can’t tell anyone about this Kat.  It has to be completely confidential we may even have to sign something to make sure we don’t talk about it.”

“Yeah, yeah, absolutely, that’s no problem.  I won’t say a word.”

Well there were at least two other people in the car that day so that was that promise out of the window!  But in the lead up to that day I swear I didn’t tell anyone else that I was going to ITV to speak some writers about Bipolar.  I swear…

You know how kids get on Christmas Eve when Santa is going to creepily break into their home, eat the contents of their parents fridge and then leave them a stack load of presents before he goes off to an infinite number of other houses and does the exact same thing?  Picture that level of excitement… because that was me the night before I went to the ITV studios.  I was a just like a kid on Christmas Eve.

Admittedly some aspects of that day are a little blurred.  I had to look like a professional, I was supposed to advise these writers (the verbal geniuses of my most favourite soap in the world) on how to conduct a realistic representation of my illness. 

Anyone who knows me well knows my ultimate dream growing up was to be a writer, I wanted to write for Coronation Street.  By this point, at the age of 34 I knew I was never going to achieve that and this is the opportunity so much.  Bernard has prevented me from doing so much with my life, if things had been different maybe I could have fulfilled that dream, we’ll never know; but this was the next best thing.

That first visit we were given lunch.  It was a buffet.  Heck.  I hate buffets.  Give me a plate full of food and I’ll eat it but for God’s sake don’t ask me to queue up in a strange environment behind all these creative professionals and expect me to somehow not stick out like a sore thumb.

Buffets are like first dates.  Why do people go out for meals on a first date?  You’re nervous so you can’t eat or you’re so self-conscious you feel like you shouldn’t eat, or maybe if you do you’ll drip sauce down your new top or you’ll get lettuce stuck in your teeth.  Buffets are the same.  If you put too much on your plate you’re greedy but you have to put something on there because otherwise you’ll be weird and ungrateful.  I went for minimal sustenance.

So we go into this room and it is exactly like you’ve seen on TV.  Massive room filled with tables in a large square and they’re covered with white cloths, so I also can’t spill anything off my plate because then I’m messy as well as everything else.  The room fills up with people, they smile and nod and they eat their lunch and once the room is to full capacity there’s a man sitting next to me and he introduces Sandra and me and explains we’re from Bipolar UK.  Sandra talks about the charity and I have no idea what she’s saying because all I’m doing is looking around the room at the people wearing funky glasses, quirky tops with stripes and they’re the exact replica of what I wanted to be when I was growing up.  At some point they opened up their MacBook Pros, switched on their iPads and in my head I’m thinking…

“I still write in a Moleskin and think it’s cool.”

I look down at my plate baring a king prawn next to a slice of cucumber expertly curled and a cherry tomato that keeps running away from the fork shaking in my hand and I know full well, there’s no way that food is meeting my mouth in this room.

That room was my dream.  In that room I told myself that even though I hadn’t achieved what I wanted to, I was part of something so big I could never describe to anyone how it big it really felt.

I imagine to the writers in that room, it was just another storyline.  Just another bunch of characters they had to find dialogue for.  The thing is, when you’re putting a label like Bipolar on a character you have to get it right.  If you get it wrong and you upset the audience you’ll lose that audience and the whole show falls apart.  That’s why they ask real people to go in and tell them what the illness is really like. 

I’m a co-facilitator for the Manchester Bipolar UK support group and every month (pre-Covid) I always stress that everyone’s Bipolar is different.  You’ll never get two people the same so getting a character to represent an illness and also be an individual is tricky. 

I got to tell them my facts.  I got to show them the way to introduce the character so that they didn’t anger every Bipolar person in the country.  They laughed when I talked, they thought I was funny.  Someone in the room casually said…

“I think you should be sitting here”

…and I thought…

“Yes, I probably should.”

How do you go back to your office job on Monday having been in that room?  How you copy and paste and click send into countless emails after you’ve been with a bunch of writers who you should be sat next to not in front of?

Reality sucks…

Wednesday 5th March 2017

Let’s cut to the chase.  Sandra and I were invited to go back to the ITV studios, only this time it’s a little different.  This time we’re meeting with the researcher, two producers and the actress playing the Bipolar character; Connie Hyde.

(Little bit of filling the grey bits in for those who don’t know, Connie was playing Gina who is Sally Metcalfe’s sister)

Believe it or not this was less intimidating than the square table situation.  While we were waiting to be greeted in the lobby Eileen walks past and then Rita from The Cabin waves bye to the receptionist and then Ken gets in to a really flashy car and all of this just blows my mind because I have never been any good with celebrities. Star struck just doesn’t cover it.

Dominic the researcher took us up to the canteen for lunch, this time I got wise and said I was too excited to eat (I said I was less intimidated, I didn’t say I was composed), he did manage to make me a cup of tea and I wondered if I could take the ITV mug home with me (I didn’t).  Sandra was talking away and I looked around and in one corner Eva was laughing with Peter Barlow, a few tables down Gail was eating a sandwich and then in walked Audrey and I just thought…

“How the hell am I going to look normal?”

People always tell me…

“You know celebrities are human, they poo and wee just like the rest of us.”

Yeah, I know that.  But right at that moment, when Rita walked past me she looked exactly the same as she does on screen, just perfect and I tried to tell myself that she is just like me only I kept thinking, her poos are probably golden!  I’d been watching her on my television for 27 years, I’d seen practically every husband, every bad choice, every humorous comment she’d made within that time, the woman was royalty! So how was I going to conduct myself in a professional and sensible fashion when I was smiling like an animated Meerkat on speed!

I have no idea how we got to the next part of the building.  I remember shaking hands, I remember smiling and being shy but trying not to be because I’m trying to portray this punk-ass public speaker type image to show people I’ve achieved something even though I’m the one in the room with the diagnosis.  Sandra’s the messenger, she’s the one who tells people the facts but she doesn’t have the real insight into the illness, that’s my job.  I’m the one who has to tell the story and try and show these people all angles of my condition because remember, no-one is the same and while I can’t represent everyone who has the disorder, I am in that room to represent myself, at least.

The room overlooked the whole of Media City. Everything was calm, it was all still and strangely, so was my heart.  It’s a funny thing being me.  I freak out and then something in me just changes.  Like going on stage before I do a talk.  In the lead up to it I question myself a million times,

“Why are you doing this?”

“Why are you doing this?”

“Why are you doing this?”

And then, right before I step on the stage I think to myself…

“…because there’s a reason for it…”

Everyone has dreams, writing was always mine, but I was not a writer I wanted to be and I’ve always felt that Bernard took that away from me.  Yet here I was using the one thing that takes no prisoners and destroys everything in its path; the thing that has almost ended my life on so many occasions and I’m about to use it to influence a television program and a whole team behind it into creating a realistic representation of Bipolar Disorder.  The very thing I would kick to the curb in a heartbeat.

That was the reason behind my sense of calm.  My job wasn’t to write but I was still there to tell a story.

When Connie Hyde walked into the room she had a folder in her arms.  She shook my hand as she sat down in front of me and she opened up the folder.  Sandra went through the technicalities of the illness… and then the floor was mine.  

I’d be lying if I said I can remember what Connie asked me but I remember she started to write.  I gave her my story.  I told her how Bernard came about, I told her about all the weird things I’ve experienced, the obsessions with drag queens and swans, the compulsion to save the world, the six admissions to locked psychiatric wards, losing friends, losing myself, losing hope.

I remember looking directly at Connie, into her kind eyes and at her pen as she wrote down my words.  I remember glancing to my left and one of the producers was crying when I told them that the system gave up on me and my life was deemed pointless.  Then she laughed when I told them all that I’d achieved everything they said I never could, I even touched my face with my left hand so they could see my wedding band to prove it.

That room was incredible.  The feeling was indescribable.  Who would believe this?  It was so far off the scale that even though I was there I wasn’t sure if it was really happening.

When we filed out of the room I handed Connie my business card.  It was my first business card, the one before the website, before the blog, before anything really.  Sandra panicked and wanted any contact to go through the charity but it wasn’t about drumming up business or staying in contact, it was about proof.  I wanted her to have something to remember me.  I thought maybe if she was struggling to get into character or she needed a reminder of the face behind one version of the illness, then she could look at my face on my business card and remember who told her their story.  I wanted her to remember that even though her role was a work of fiction, it was real for someone.

I think the most difficult thing about this process was not being able to tell anyone.  God that was hard!  It’s like someone sitting on a wasp and then telling them not to move.  It’s practically impossible. 

When Gina walked onto the cobbles and the monthly meeting of the Bipolar group came round I knew one of the topics of discussion would be the latest Coronation Street storyline.  By this point I could tell everyone and everything that I’d been part of the process and I’m not going to lie, I told that story with a smile as wide as slice of watermelon!

But it’s a sad moment when you’re revealing your best kept secret and you realise 90% of the room question why it was you who had been picked to go.  The simple fact is I’m an ambassador in the north west and that’s it.  It’s the charity’s red tape, it’s just geography, it’s nothing personal and it’s not about picking favourites; I was just local.

The best thing about being part of the…I guess you can say…storyline or maybe the plot, was sitting in my living room watching it play out and the actions on the screen mirrored the things I’d talked about.  I was proud of the writers because they showed they’d listened to what I had to say and I’d been taken seriously in a world where that’s sometimes difficult.

There’s one thing that I loved about watching Gina on my TV, it was like watching me.  I don’t know if it was intentional or if I’ve seen something that wasn’t really there but so many people asked me if Gina’s obsession with dogs on plates was a representation of my love for swans? If it was, I’ll take it!

I’m not going to lie; I was gutted when Corrie didn’t take Gina’s story to the heights that it could have gone.  They could have shown the soap world how to really do a Bipolar storyline because there was so much they could have done with it.  Maybe they forgot about it amongst all the other storylines?  Maybe they changed their minds or maybe they were doing what I try to do, prove to the world that you can live well with a mental illness.  Who knows? 

I wrote an article for Bipolar UK’s magazine Pendulum about my involvement with the show and I sent it to Connie.  Over the last couple of years we’ve had a couple of messages here and there and that’s been nice, every message she tells me I helped her and inspired her but I can’t take the credit for her work.  The day we met she looked as though she wanted to get her character right.  She wanted to portray Bipolar Disorder realistically because it’s so easy to get it wrong and I know she’s reading this because I asked for permission name drop her; so I want everyone to know that she did a damn good job playing Gina and should she ever return to the cobbles, I’ll be glued to my telly like a mask that sticks to your face when you breathe in. 

When I started public speaking being an inspiration never entered my mind, I just wanted to tell my story in the hope that people would listen.  It’s incredible how many doors its opened, it’s given me so many opportunities that I still find unimaginable.

I haven’t travelled the world but I’ve had some damn good holidays.  I’m not rich but I can pay my mortgage. I’ve never had my heart broken and I count myself lucky in that department.  I may never have tried drugs or smoked a cigarette but come on, have you seen what those things do to people? 

When I started writing the blog I didn’t know if I had anything people could relate to.  I didn’t think I had anything that people would want to read about, I felt like I had nothing and I’d achieved nothing.  But what is an achievement?

Is it buying a fast car and having a posh job?  Is it being able to buy expensive jewellery because you’ve earned the money to do it?  Is that what is says in the dictionary?  Are those the things it lists?

You can label it whichever way you want to but in reality the definition of achievement can’t always be found in the dictionary.  Sometimes we have to define achievement according to how we live our lives as an individual.  No two Bipolar people are the same and that goes for human beings in general.  We spend so much time comparing ourselves to others and talking ourselves out of things that we don’t realise we could be missing out on something wonderful if we were just brave enough to take that chance and see what’s out there.

These days I think outside of the box.  I gave up trying to be something I’m not a long time ago and I’m happier now than I ever was because I set my own goals and, if I reach them I tick them off a list because maybe achievement is about never giving up. 

Maybe achievement is about trying to live life the way we want to and seeing what comes our way.  Maybe its about trying not to be afraid.  Maybe its about throwing caution to the wind and embracing a cloud to get to the sun that eventually breaks through.

Maybe achievement is simple.  Maybe it’s about taking a risk and accidentally falling into your childhood dream and even though it looks different to the way you wanted it to, you can still make an old man proud…

Dedicated to Albert Patrick Mullineux

And thank you to Connie Hyde

Share:
Reading time: 21 min

We all poo.  Whether we like to admit it or not we have to get rid of the meals we’ve eaten, because let’s face it; what goes in, must come out.

I know as I write this there will be people thinking…

“She shouldn’t have written this…”

“No one wants to know about anyone else’s bowel movements…”

“There are some things that you just don’t talk about!”

But isn’t that the whole point of this blog?  Isn’t that whole point of me doing the things I do and saying the things I say?

I never asked for Bipolar and I never asked for a stoma but this is what I have and there’s nothing I can do to change it; so to echo my own mantra, all I’m doing here is making the best of a bad situation in the hope that some good might come out of it. 

Pre- Stoma 2007

Today this isn’t about mental illness, today this is about poo; I’m sorry, but like I said we all do it and maybe it’s something we shouldn’t be shy about.  No one bats an eyelid when people talk about growing a baby and childbirth…

“It’s the most natural thing a woman can do.”

“The human body is so amazing to be able to create a brand-new human being.”

I agree. It’s true.  However, people fail to realise that a human’s ability to poo is also the most natural thing the body can do and it dictates how that person lives.  The most incredible thing about the body is its ability to process food and excrete it.  I can’t say it enough…

we all do it.

Its a common misconception that the rich and famous don’t go to the toilet because they are too beautiful but lets set the record straight right now…

Chris Hemsworth does it…

So does Harry Styles…

Zac Efron does it…and if you think Megan Fox doesn’t poo, you’re mistaken…

…because so does Jessica Alba…

And as for Arianna Grande…she’s not that tiny for no reason, she has to poo just like the rest of them.

This is not for the faint hearted, if you can’t talk bodily functions then the door is where you left it, turn right around and walk back through it because I am not going to apologise for anything I write on this one.

So let’s cut to the chase, why do I crap in a bag and how did it get to this point?

Constipation, that’s all it was.  I couldn’t poo. As a kid I’d go for days without going to the toilet.  I’d get back ache, stomach-ache, eating was a nightmare because everything was backed up with a week’s worth of chewed up meals.  Sometimes I’d get so blocked I’d throw up and sitting on plastic chairs at school was horrendous. 

When I was thirteen I hadn’t been to the toilet for around two weeks.  The pain was so bad my mum took me to the doctors who said there was something wrong with my Appendix but because they hadn’t burst there was no need to go to hospital.  A few days later the pain stepped it up a notch so Mum took me to A&E.  The doctor there was about to admit me until he realised there was nothing wrong with my Appendix, I just needed to go to the toilet.

Skip forward to 2010 when Bernard the Bipolar brain was rocking my world and my psychiatrist prescribed Quetiapine.  He ran through the side effects with me and I remember constipation was one of them, I waved away his comments and said…

“Oh I get that anyway, I’m used to it.”

But this is where the journey really started because he wasn’t wrong, my existing problem got a whole lot worse.  Bernard went back in his box and closed the lid but the nightmare of Connie constipation was playing out like a horror film with all the anticipation of fear but no scary resolution. 

The GP said…

“Eat more fruit and vegetables…”

But it didn’t work.  They said…

“There’s no cure for constipation.  It has to be managed with laxatives.”

And boy did I try them all…

Colon cleanse

Lactulose

Senna

Senna max strength

Dulcolax

Fybogel

Movicol

Bisacodyl

Picolax

Peanut enema

Laxido

Exlax

Colax

Fruits & Fibres Chewable cubes

Califig – I could drink up to a bottle of that a day

Suppositories

Then I tried all the seeds and supplements you can imagine but nothing helped.  It just got worse; pain, bloating, trapped wind and all I could do to ease the pain was have two hot water bottles, one at my back and one pressed between the desk and me trying to ease the pain of an air bubble that couldn’t pass through because there a mountain of fibrous fruit and veg standing in its way.

I was referred to a specialist, had a colonoscopy (that was fun), but the alleged cure he gave me didn’t help.  I went back to him a year later because the GP just said increase the laxido.  I was taking eight sachets a day when the limit was four and it still wasn’t helping.  He said…

“I’ve done everything I can… so I’m sending to a specialist unit at Wythenshawe hospital.  You’ll probably need a bag.”

This is probably someone’s worst nightmare.  Poo comes out of your bum, it’s not supposed to come out anywhere else but I wasn’t fazed by this; within about 20 seconds I already knew this was the only solution to get rid of Connie constipation.

Then shit got real.  After 32 years of people telling me to eat more fruit and veg and take more laxatives on top of more laxatives, suddenly I was actually being taken seriously. 

I walked in to the Gastroenterology department like a deer in the headlights.  How was this going to be any different to the GP telling me to eat more apples? How could I convince these people that I was at the end of the road and I couldn’t take any more?  I was taking 10 senna tablets on top of 6 sachets of Laxido and at least 12 Buscopan doses a day to try and cancel out the trapped wind. 

I never cried about my situation, I never shed a tear because if Connie was anything like Bernard and it wasn’t going away, then all I could do was deal with it.  

So I sat in the waiting room and I looked at the people around me and I thought to myself…

“This is what the last chance saloon looks like.”

I didn’t care who saw me, doctor, trainee, top dog surgeon or a banana farmer because I had no expectations, at this point all I’d had was a stack load of false hope and disappointment so when a twenty-something year old guy stepped into the waiting room with a folder in his hand, said my name wrong and smiled, I smiled back because even though he looked about twelve, he looked kind.

Dr Heywood

In the consultation room he opened up the folder baring the referral letter from the specialist and he looked at me and said…

“I used to work with Dr Loganathan.  He’s sent you to the right place.”

After that I can’t really remember what he asked me and I have no idea what I told him, but twenty minutes in he left the room and came back two minutes later with the top dog surgeon, Miss Telford.  I could tell instantly that she was not a woman who messed around; she knew what she wanted and she knew what to do in order to get it. 

She sat on a chair in front of me that had the height of a foot stool and she looked at me over her reading glasses, then she looked at the notes Dr Heywood had written and then back into my terrified eyes and said…

“We can definitely help you.”

I can’t explain it, that feeling of something so beyond relief whatever you want to say or however you try to say it, no one will understand because you’ll never be able to recreate that one single moment where you start to see there is light in the darkness.

That moment, hearing her words was like hearing the voices of a thousand angels singing and they were saying…

“Now you can cry.”

Treatment for any kind of health condition mental or physical is never straightforward and it’s never a short journey.  I had to have the most bizarre tests and investigations that I’d never heard of and to this day I wonder to myself…

“Who the hell came up with that one?”

Now if you can’t handle this next bit, look away because this is not for the squeamish.  I mean it, look away now because it is not pretty. 

I had to have balloons inflated into my bum to see how strong the muscles were, it turns out my muscles no longer worked.  I had to swallow 100 teeny tiny plastic pieces and then have an X-ray to see how fast they travelled. I had to stay in hospital for a day where I ate a meal of Smash and beans and had to blow into a tube like a drunk driver every half an hour to see how long it took to digest the meal over an 8 hour period.  It never digested.   I had to drink two cups of Barium Swallow in thirty minutes, it’s vile; it tastes like chalk with mixed with water, and sit in an elevated chair in front of a camera while people yelled at me and told me to clench my bum cheeks but then realised I couldn’t because I had no rectal muscles, a prolapse and a growth where I’d complained about a pain but it was never taken seriously.

When the nice young doctor asked if I would take part in some research he was doing I agreed because he’d been so nice and so helpful and I thought it was a…

“…you scratch my back, I’ll scratch yours…”

…kind of situation.  But if I’d known it was going to be two very young and admittedly handsome doctors stuffing balloons up my jacksy that wouldn’t stay up there, I probably would have said no.  A lesson learned.

I have to say, at this point everything was laughable; it was the most bizarre situation I had ever been in and I had to work all the tests around my working week and the only saving grace was to be able to offload all of these ridiculous tales to my desk buddy Jayne, you may not realise it but you made the situation so much better.  Had I sat next to someone with a poo phobia, I know it would have been a very different story.

At this point it’s April 2016 and I’m supposed to walk down the aisle in seven months time.  Miss Telford tells me all of the crazy tests point to the only solution being an Ileostomy, so in technical terms they bring out a tiny blob of your small intestines which becomes the Stoma, it bypasses your colon and you poo from your tummy.

I wanted it done.  I wanted it quick so that I could have some kind of normal life.  I’d have cancelled my wedding.  I didn’t care, I was in that much pain I was willing to give up the dress and the day and disappoint every single person on the invite list so that I could get my squidgy blob and I’ll admit right here, right now, in front of everyone who came to my wedding that I was devastated when Miss Telford said…

“Get married first, then we’ll do it.”

Unless you know what it’s like to need an operation for something you’ve lost your grip on, you’ve no idea what it’s like to have  to wait twelve months for it.  All I could think was…

“What if I’m walking down the aisle and I have to turn back because I need a poo?”

“What if I don’t make it?”

“What if I make a mess of my dress?”

“How the hell do you poo in a wedding dress?”

But time stops for no one.  Life still goes on around us even though we might not want it to. Even though I really just wanted to stay at home and lie in bed where I was only a few steps away from the toilet, because at this point if I needed the loo there was no warning, there was no suggestion of it happening, it was a case of…

“Hi honey I’m hooooommmme”

And I had about five seconds to find the nearest toilet and hope I got to it in time.

People used to say that they never knew I was ill, they could never tell that I needed an operation or that I was in pain; when they saw the hot water bottles they just thought I was unusually cold.  I’m a good actress, I can pull the wool over most eyes but now I’d like to apologise.  I’d like to apologise to all the girls at STA who had to share the three cubicle toilet with me.  When you thought you heard a trombone to your left or a tuba to your right, it was me.

To anyone who walked past the franking machine and thought someone had chopped a body up and hidden it in the cupboard where we kept the bubble wrap, that was no dead body, that was me.

I’d like to apologise to my parents in law who have always been unbelievably kind but when I stayed at your house for the first time in 2013 and my bowel decided to work unexpectedly, I blamed the smell on Matt but it wasn’t Matt; it was me.

To everyone at BAND before the move from the YMCA, when I ducked out of your training sessions without time for an apology, it was me using all that toilet roll.

To the guy who pulled his jumper over his nose on the Trans Pennine Express to Edinburgh, I lied when I said…

“I think the guy before me ate something dodgy.”

It wasn’t a guy… it was me and I didn’t eat anything dodgy.

I apologise with my hand on my heart to the two old ladies at the North West Regional Speaking Competition for the Association of Speaking Clubs, you would have thought the fancy hotel would have more than two toilets for us to use and I really did think that you wouldn’t smell my eight day old poop over the half a bottle of Anais Anais you’d doused yourself in that morning.

I’m sorry to everyone who ever encountered my bowel movements. To the houses I went to, the shops I mooched in, the cafe’s I ate in, whatever you saw, whatever you smelt … it was me. It was all me.

It’s the 11th May 2017.  It’s surgery day.  It’s bye bye old life, hello new one! It’s farewell to sitting next to the toilet at work, it’s a shrug of the carefree shoulders to planning out the daily dose of laxatives depending on how close the nearest loo is. 

You have no idea what this operation meant to me.  People thought I was crazy; how could I be happy about this?  How could I want this?  Was there really no other option?   

Truth be told, I didn’t care what anyone else thought, it was no one else’s business.  I’d had 12 months to get my head around the idea of having a stoma, a squidgy blob poking out of my tummy.  A little red thing that looked like a weird willy. 

I had to cope with this somehow because there was no chance of a reversal and this was going to be with me for the rest of my life so I gave it a name.  I had this weird idea that if I gave it a character and a personality I could be friends with it, I could love it like I love any of my friends and it would make it easier to look at and to live with.

“Wilomena”

The first time I looked at her after the op she moved, like a little worm with a big head and I thought…

“Oh dear lord, why the hell is it moving?”

It’s the weirdest thing to get your head around.  You no longer poo out of your bum.  You don’t pump out of it either.  Literally nothing comes out of there because it all comes out of your stoma.  It pumps, it poops and it moves like your rectal muscles should.  It’s the same game but you don’t have to rush to the toilet because your toilet is attached to you.  And when I walk through the street and I feel my bag and it’s got last night’s meal in it I can smile with joy and I think to myself…

“Here I am, just shitting in the street.”

I love Wilomena; she has given me my life back and now there is laughter where there was once sadness.  I am endlessly amused by the unfortunate burps and raspberries she makes and I am thankful to my desk buddy James for finding it funny and embracing it when other people were horrified.  Thankyou for feeding her tea when she pushed my mug across the desk (oh yeah, sorry that was me).

Thank you to Nathan Langton for inviting me on your podcast back in August.  I spend my life talking about mental health and living with a mental illness but no one ever wants to talk about poo.  You have no idea how much the 45 minutes of poo related airtime meant to me.  The freedom, the laughter and being able to go into intricate detail about a stoma to someone who has never heard of one was liberating.

Sh!T Talk and Banter

I don’t look ill anymore, I have freedom, I don’t take laxatives and I’ve taken about 6 Buscopan tablets in the last three years. 

But sometimes life doesn’t always go to plan.  It likes to throw you those curveballs at every opportunity, so here’s a letter to Wilomena to finish things off…

Dearest Wilomena,

I’m sorry I sneezed. I’m sorry this made my stomach muscles flop and collapse but it really wasn’t my intention to cause either of us any harm.

I’m sorry we only had 16 months of matrimonial happiness.  I’m sorry that you get tired. I’m sorry that something in there is wrong and it’s changing the shape of your face.  I’m sorry you look like a really ugly tennis ball and I’m sorry you get the blame for all the pain; I know it’s not your fault.

I know we had a CT scan yesterday and that was an experience of its own but whatever the results are, if we have to part ways and another stoma takes your place just know that I have loved you.  If we have a hernia and Miss Telford can fix it so that we can stay together, you should know I will always love you. 

And if nothing can be done, if we remain in pain and you’re still as ugly as sin, don’t worry my dearest Willy, we will get through it together; the way we always do.

Lots of Love

Katerini

Post stoma – 2017
Share:
Reading time: 17 min

We all say things we don’t mean.  We say things that we think are funny but no one else does.  We might be that unfortunate soul who doesn’t realise that the person we’ve said something to isn’t laughing because they’re crying on the inside. 

It sounds like every time I write one of these I’m complaining about life.  I’m giving airtime to the troubles I should have put to bed a long time ago.  Maybe that’s true, perhaps I am dwelling on the past and I’m being a pessimist about the future and maybe I’m reading too much into the present.  Whatever your thoughts are, if you stick around then I appreciate your patience and I am thankful to you for giving up your time to read another one of my “whinges.”

I was in my last job for 11 years.  I walked into that office thinking this was my first full time permanent job, I was a commuter and back in 2009 the sardine can train was worth it because I was on my way to being the adult I never thought I would be.

It’s no secret and I’ve said it often enough in the last 5 years that back in 2002 a social worker told me my mental illness was too serious for me to finish my degree.  They said I would never work, not part time or full time and I would never have a romantic relationship because a girl with Bipolar was not good marriage material.  Well I don’t like being told what I can and can’t do and everyone should know by now that even though I took those words to heart and I initially abided by the suggestion of a solitary life, I didn’t do it for long.

I’d never been in an office environment where I wasn’t a temp or I wasn’t covering someone or the temporary hands on deck person that was tossed to the side when the Christmas period was over.  I wanted to make this work, I wanted to be the best version of myself and shine!

That’s what I wanted.  What I did was a very different story.  I walked into the office and I shrivelled up like a flippin prune.  I was a fish out of water.  I went all shy, I retreated into my own little world and I have no idea what people thought of me at that time but I knew it wasn’t the image I’d wanted to project. 

I was doing a 12 hour day, leaving the house at 7am and rolling in at 7pm.  I was tired, I was worn out and I wasn’t even getting any job satisfaction because when you think people don’t like you, what kind of satisfaction can you take home with you?

I know everyone who works gets tired, it’s just the nature of working life, it’s not designed to be easy.  But not everyone was trying to conceal a mental illness that takes up more energy than you can imagine.  Not everyone was on 20mg of Olanzapine and various other psychiatric drugs, heavily sedated and trying to prove a point that a normal life could be achieved if you just worked at it.

I went to bed at 9pm.  I rose at 6am.  I said no to virtually every Christmas meal, every spontaneous night out and if anyone left the team for pastures new I said good bye to them in the office because what was the point in sticking around in Manchester when all I would be thinking is

“What time will it be when I get home?”

As the years went by in that job, I like to think that people liked me.  I like to think they saw my quirky side, that I could be a bit silly but I was also sincere, even when I made up a lie in order to avoid another social gathering. 

In all honesty Bipolar disorder is not a walk in the park.  When it comes to medication it’s not like taking paracetamol.  It’s not a cure.  It makes the symptoms take a backseat, they are masked, they give your brain a rest and they make everyday living so much easier.  Every single one of my Bipolar friends will tell you that medication is just one aspect of living a positive life with a mental illness, another aspect of it is management.  What I didn’t realise for so many years was that just because you take your meds it doesn’t mean you can live like the rest of the world, just as someone with Diabetes will inject their insulin, it doesn’t mean they can go to the shop and eat 5 snickers bars and can of full sugar coke.

People don’t realise that mental illness is a massive ball ache to manage.  With Bipolar Disorder I have to have a regular and strict routine.  Sleep is 100% a key factor in staying well.  If you’re Bipolar and you don’t sleep, you can kiss goodbye to the normality of your thinking patterns.  I get creative, I think if I can’t sleep I obviously don’t need it.  I get racing thoughts, my eyes play tricks on me and my whole world that I’ve worked by backside off to achieve falls down around me like a sack of mouldy potatoes with no where else to go.   

When you’ve been in hospital 6 times, twice facing being sectioned if you don’t comply, when you’ve seen some of the things I’ve seen people do behind the locked door of a psychiatric ward then trust me, the second you realise the life of a normal person who can party like a rock star isn’t possible because you need to take the beast of Bipolar in hand; then you’ll realise the kindest thing you can do for yourself is to question if you really want to repeat the cycle of self-destruction just because the rest of the world thinks you’re boring and you should just enjoy yourself because life is just too short….Well yes, life is too short, it’s even shorter when you’re living part of it on a Bolton psychiatric ward losing weeks and months of time trying to discover what reality actually looks like because believe me, when you find your way back into the real world you will never get back the time you have lost.

Try having a physical condition on top of a mental one.  Try having a bowel that doesn’t work and the doctors just keep saying drink plenty, eat more fibre and increase your dose of senna.  Try needing an operation for an Ileostomy and having to wait 12 months for it and while you’re waiting you have to sit by the door in the office so you can get to the toilet in time.  Try having to use two hot water bottles at work because you’re in too much pain and intense heat is the only thing that helps.

I love my stoma, I really do and I never need to worry about where the nearest toilet is because it’s now attached to me. But 1 year later tell me how you feel when you sneeze and you feel something inside you drop.  Tell me how you feel when the stoma nurse tells you your stomach muscles have collapsed and that’s just what happens when you have keyhole surgery.  Tell me what your reaction is when your stoma changes shape and becomes the size of tennis ball.  What do you do about the pain?  What do you do when you have to push hard on your stoma because there’s a bulge around it and you know it’s a partial parastomal hernia but the stoma nurse says it’s nothing because your tummy always sticks out when you’ve had abdominal surgery.  When the GP says you need to lose weight what do you do?

What do you do?

Well if you’re me you just get on with it.  You suck it up because there’s no other alternative.

I tell myself I’ve been through worse.  Bipolar is way harder than anything Wilomena can throw at me.  So what if it hurts 90% of the time? Who cares if it feels like someone has their hand inside my gut and is twisting my intestines like they’re doing a tug of war? 

Sometimes the world fails us, the NHS has had so much praise over the last few months and hats off to them they’re making the best out of a bad situation, but sometimes the NHS fails us and all we’re left with is to make the best out of our own bad situation because the reality of it is, if I crumble, if I flounder and if I fall, there is no mortgage fairy and time does not stop ticking just because my mind takes a ride on the Ferris wheel of Bipolar chaos.  Life does stop to consider its options when Wilomena decides she’s having a bad day and there’s nothing you can do for the pain except lie flat and that really isn’t an option when you’re sat at a desk all day.

I’ve been through worse…

…what do I do?

I make adjustments.  I turn up the volume and I do my best at life.

When I lost my job in the summer I didn’t fight to keep it.  It was time to move on anyway so I pulled my finger out and I signed up to every job site there was going and I applied for anything I thought I could do. 

I applied for jobs that I were too far away, underpaid, overpaid, a pipe dream, too few hours, too many hours.  Caught up in a Covid world of uncertainty I never imagined I’d fall on my feet.  I got a job that I really do love.  It’s less hours, there’s no commute and I’m in love with the people.  But you know what?  Nothing has changed.  I still have Bipolar and a massively problematic stoma.  I’m still tired and I still get pain. 

So if I have to start getting ready for bed at 8pm I’m sorry.  I’m sorry this makes me boring, I’m sorry you think that because it’s the weekend you think I should

“Live a little”

But regardless of what day of the week it is, nothing has changed.

Try taking 3 mood stabilisers all of them at a high dose.  Try to manage your tiredness and all the other side effects that, believe it or not you can live with because hospital is a much worse place to be.   Try analysing your every thought every second of the day to ensure you’re on the right planet.  Try praying that every stoma twinge is not going to turn into an infection because you haven’t got the time for it and you don’t want to go into hospital when its rife with Covid. 

So if you think I’m boring, if I’m not the person you want me to be and my lifestyle doesn’t match up to what you think it should; then I’m sorry.  I have never used being Bipolar or having a stoma as a reason not to do something and yes they are the reason I live my life the way that I do, but going to bed early, not drinking, not having late nights and all the over thinking; you have to understand, it’s not holding me back from life, the routine isn’t a punishment or a sacrifice; it’s just…

…damage control…

…it’s just me looking after myself so that I can go to Josh Groban concerts.  I go easy so that should Covid ever take a break I can invite a friend over for a curry and a chocolate cake we probably shouldn’t eat.  

All of this is so that I can meet my friends for coffee after work.  I do this so that I can go to work every day.  If I work I can pay for a holiday where I can take stupid selfies, eat ice cream and do doggy paddle in the infinity pool like a pro because I was never any good at breast stroke.  I can have my moment of Hollywood fame where I act out the priceless moment of getting out of the pool like a supermodel but it turns into a scene from Jaws where I look like I’m being dragged back in by a frenzied shark. But my favourite part is lying on a sun lounger with my ostomy bag basking in the scorching sun and everyone else is staring like its an alien and I’m just like…

“Yeah, I crap in a bag, what of it?”

My daily routine is dull as dishwater so that I can stand up in front of a crowded room and say…

“…this is how I do it and as dramatic as it might sound, this is how I’m alive.”

I am who I am because I take control.  Sometimes I loosen reigns, sometimes I try to fit too much into the few hours that we get during the day and sometimes I don’t do enough. 

…but everything I do, every technicality of the routine I call damage control is so that I can be the best version of myself. 

Share:
Reading time: 11 min

“In the past, what has helped?”

That, is my new community psychiatric nurse (CPN) talking.  I assume she’s trying to be helpful, trying to gage what the best course of action to take is. 

She’s been lumbered with a new service user who most likely has a red flag or a black mark that pops up as soon as she types my name into the system… I wonder what I says … I’m awkward?  Difficult?  A know it all.  High functioning?  All of those things are true.  I know myself. At least I thought I did. 

I usually see my signs and I handle them accordingly.  I kick them up the bum and tell them to “do one!” because I haven’t got the time for a Bipolar episode.  I have things to do but, you know what? Even experts sometimes make mistakes.  Nostradamus predicted the end of the world was in the 1990’s.  He was wrong.  We’re still here, albeit barely.

I appreciate that she’s asking this question, but her tone of voice tells me she’s bored already.  She knows absolutely nothing about me, she’s made no effort to gain any insight into my character, maybe she thinks by asking this question I’ll tell her how to do her job, make it simple.

I can hear on the other end of the phone she’s got a list of questions to ask me and with each answer she ticks off the question but doesn’t register what I say because then she’d have to do something.

Q. Are you eating?

Q. Do you have any Covid-19 symptoms?

Q. Do you know the Covid-19 regulations? A. I would hope so, we’ve been in lockdown for over a month!

Q. Is it just yourself living in the property?

Clearly she thinks I’m using the title of Mrs. as a decorative addition to my ridiculously complicated name.  I mean come on!  Even I know my marital status will most definitely be on the first page of my notes, she’s not even read that! And she keeps calling me Katrina!  That is not my name! 

So here’s the thing Karen, here’s the answer to your question; here is what has helped in the past…

Talk to me like a person!  Call me by the right name.  If you’re unsure I can teach you how to say it because it really isn’t rocket science.  It’s quite simple, Roy Walker said all the time “just say what you see”

“Kat…er…ini”

Take an interest in me because I am more than more than my diagnosis.  Ask me if I have a job and don’t be surprised when I tell you ‘yes’.  Ask me how long I’ve been married and don’t be shocked when I tell you we own our own house. 

Don’t assume when I tell you I’m a public speaker that I simply stand with a piece of paper and read a list of facts about how awful Bipolar is and how I let it beat me.  I am more than that!

I am the colleague at work who gives up lunchbreaks to discuss the emotional turmoil of others.  I am the friend who forgets to tell other friends exciting news because I know it’s not of interest unless they know I gain nothing financially for the work I do.

I am the 37-year-old woman who hates saying woman because I still feel like a girl, 

I am obsessed with music.  I have it playing 24/7 because it makes my world bearable because sometimes silence is deafening.

I am the writer who can’t call myself a writer because nothing is really in print but every word I write, no matter who reads it or doesn’t read it, bares a part of my soul I can never share.

I like to shop!  I love to shop.  I only wish I had more money in order to do it.

I have a passion for travel.  I love a holiday.  Who wants to stay in the same four walls when the outside world is changing every second?

I can’t tell you what helps.  That is your job to find out.  How can you help if you know nothing?

I am a person before I am Bipolar.  Are you a person before being a nurse?

Take a look at the bigger picture…

…I’ve just painted it.

Share:
Reading time: 3 min

Last night my blog went live.  When my website went live I was excited.  I was nervous but it was a calm kind of nervous.  I had this hope and longing that I would get work out of it.  I hoped that a flock of hungry admirers would reach out and hire me for their conferences, school mental health days and universities would hunt me down and ask me to speak to hundreds of students about the realities of living a life with a mental illness and a physical issue combined.

Before the blog went live I didn’t ask anyone if it was okay to do this, just as I didn’t ask anyone if it was okay for me to speak out about my mental health.  Maybe there’s a difference between telling your story in a professional capacity as opposed to airing the dirty laundry of your past for all to see across the entire world. 

I’m pretty much an open book, I stopped hiding behind the wall of normality years ago, this was made easy because the wall was never there in the first place.  I’m happy to answer questions when people want to know what it’s like to poop from your tummy into a bag, when people ask me about being Bipolar its usually because they think they might have it and they want to gage whether they should be knocking on a psychiatrist’s door or if they can sit back and express a sigh of relief because their situation isn’t as bad as they thought.

I tell people I was a self-harmer, I confess I’ve planned to end my life more than once but there’s one thing I don’t talk about.  And that’s my cognitive impairment.  I don’t talk about it because its so hard to explain and I guess its kind of unbelievable because to look at me you’d never know of the difficulties I encounter, some of them you’d never believe were even possible.

People want to know why I don’t drive, believe me its not by choice!  In simple terms I say I’m not allowed to.  People automatically poo poo this as a valid reason because somewhere in the universe they know someone with the same diagnosis who frequently drives some form of vehicle on wheels.  Trust me, they’re the lucky ones! They drive because they can process the world around them in a nano second, they can react to a situation automatically, they just know what to do and that’s not because of practice, it’s because their brain works the way it needs to in order to safely navigate the roads.  Sometimes it takes me thirty seconds to work out how to tie my scarf around my neck.

I can’t drive a car because I can’t piece together the world around me… What’s going on to my left?  How do I deal with what’s happening on my right and what the hell do I do if a fire engine is up my jacksy and needs to get past me pronto?! People would die if I was let loose on the roads, I would die if I was let loose on the roads.  I’m not trying to be funny, I’m trying to explain that in my everyday life there are vacant spaces that I can’t fill in.

When I say I have a cognitive impairment I’m not sure what people are expecting to see.  They sometimes laugh and say, “don’t put yourself down,” but I’m not.  They tell me I’m intelligent and maybe I was once but these days I don’t feel it.  These days everything I do feels like a test.  A test to see if I can pull off the façade of looking intelligent because who wants to actually look as stupid as I feel?

When people ask me what my cognitive impairment is I usually start off by saying I have a terrible memory.  They laugh because they too have a terrible memory, everyone forgets things so everyone must have a cognitive impairment so silly me for thinking I was special.

It’s not just about being a little bit forgetful, like forgetting to put the washing machine on or forgetting to grab the eggs at the supermarket or not bringing your friends present to their birthday party.  It’s not about those things because we all do things like that, that’s human nature and I know that; but for me its different.  I can’t process information, I can’t digest it, I can’t make sense of it and because of all of those things I can’t retain the information I need to make the most of my working and professional life.  I wish it was simple, I wish I was being dramatic and self-absorbed but it’s much more than that.

A few years ago I was in a shop and I had to sign a receipt, I had the pen in my hand and I’m looking at the box I need to put my signature in, I wasn’t married so it was maiden name that I’d been writing since I was eleven, but in that moment I didn’t know what to tell my hand to write.  I knew my name but I didn’t know how to write it, not spell it, I knew that but I couldn’t tell the pen the shapes of the letters.  I managed it eventually but I walked away wondering what had just happened?

About 2 years ago I left work to head to the train station.  Manchester Oxford Road has a set of stairs that are steep and exhausting, especially after a day in the office when you’ve spent eight hours trying to reflect the illusion that you know what you’re doing.  I reached the station, I headed for the stairs, I climbed three and then my right foot stopped, my left foot didn’t know what to do either so I tripped and fell splat across the stairs.  When I picked myself up my feet were still confused so we took a moment on the stairs to gather together what the next move was.

I stood on those stairs being brushed past, nudged, tutted at and no doubt there was a lot of eye rolling going on by other commuters rushing for their trains, but all I could think was “why the hell can’t I climb the stairs?!  Why don’t I know how to do this?!”  Now every time I climb or descend a set of stairs I have to remind myself that I can do it, I have to remind myself how to do it.

When I cross roads I have to remind myself to look both ways, I have to remind myself how to look both ways.  Sometimes I look at the laces on my Converse and I’ve forgotten which way the laces go.  For a writer I’m a terrible speller, I get my to, too, two mixed up and my their, there, they’re all wrong.  I never used to.  I miss words out of my sentences.  When I brush my teeth I forget where to put my tongue so I don’t lick the minty toothpaste and make myself gag.  Sometimes when I’m reading I don’t know what the words say and I stare at the page trying to figure out why the hell I can’t read, I’ve written countless novels and short stories and I have a degree in English Literature and Linguistics so apparently I’m not completely stupid, so why can’t I read?

When I talk and my mind goes black its not because I’ve lost my thread it’s because I don’t know how to speak.  It’s not forgetfulness, it’s a vacant hole of nothingness and as I sit there looking into space trying to figure out how to get something in my head to communicate with my vocal chords and then transmit the message to my mouth so I look like a normal person I wonder, how has this happened?  What the hell is this?

It doesn’t stop there, sometimes I don’t know how to hold my knife and fork, I don’t know how to set the time on the alarm clock I’ve had for 13 years.  I don’t know how to button up my cardigan or operate the Sky remote for the TV even though I’ve been shown a thousand times.

I don’t know my way around the town I’ve lived in for thirty-eight years, I forgot how to catch a bus after lockdown.  I volunteer at food bank and I’m terrified I’ll pack the bags wrong even though its ridiculously simple.

When I do a speech it never comes out the way I want it to.  I was trained by the best man in the business but because my brain functions so differently from what his teaching requires I’ve had to adapt my own delivery so I don’t stare into the abyss when I forget how to talk.  Imagine that, I chose to be a public speaker knowing I had a cognitive impairment, knowing there would be a distinct possibility that I would look like a prize moron in front of hundreds of people.

How do I know I have a cognitive impairment?  A psychiatrist diagnosed it.  He wasn’t sure if it was medication related or if it was a rare side effect of having Bipolar Disorder and he left his post before we could delve any further.  So how do I cope? How do I deal with the things that challenge me?  Honestly?  I wing it.  I wing everything and I let my self-doubt catch up with me later.  I can’t predict what my brain is going to throw at me so I take the rough with the smooth and think myself lucky if my day isn’t a total disaster.

So why am I writing this?  I’m not asking for praise, I don’t want validation for doing this, the simple fact is, there is not enough written on this subject and I have no answers or advice for anyone who experiences something similar, but just like Bernard and Wilomena I don’t let this beat me.  I deal with it and I get on with my life.  I work, I write, I speak, I catch buses and I climb stairs.  Life is far from easy, it’s frustrating, it’s painful and relentlessly tiresome but what else is there to do other than carry on?

My cognitive impairment is annoying and frankly with the other two issues I think it’s a bit of a liberty to give me a third but don’t feel sorry for me, because I don’t.  If I felt sorry for myself I would never have achieved the things I have.  I would never have had the opportunities I’ve been given and I would never have been brave enough to show life that I can do this no matter what it throws at me.

It’s like I always say,

“I make the best of a bad situation

and I take control of it.

Share:
Reading time: 9 min

You can’t finish your degree; you have a mental illness.”

You don’t need a job; you’re entitled to benefits.”

You have a mental illness so you will find having a relationship virtually impossible.”

2003: My first experience of life on a psychiatric ward and the first time I ever encountered a social worker. After six weeks in captivity it was time to be released back into the world. I wanted to finish my degree, I was two months away from handing in my dissertation and one step closer that all important cap and gown. I didn’t know my mental illness would dictate my future or that my Bipolar Disorder went hand in hand with a social worker who was telling me the exact opposite.

I was consumed by disappointment. Was this it? Single, jobless, my mum forced into being my “carer” because a social worker said this was all a mentally ill person could expect from life. I’m not usually one for being told “no”. Tell me “no” and I will try my hardest to prove you wrong – it looked like I had to prove the social worker wrong too. 

It was never an easy journey and it took over ten years but I did achieve the things I was told I never would. I finished my degree, I got a job and I even got married! I’d like to take the credit for having the ability to do all of this alone, but that would be wrong. In 2011 I was begrudgingly introduced to a Community Psychiatric Nurse (CPN). I didn’t want a CPN and I made that very clear when I met her but I was wrong to assume she would treat me the way numerous other people had.

Share:
Reading time: 1 min