Originally experienced – March 2019
Published on – 26th February 2025
I maybe should have started with this, but who am I?
My name is Kyle. And I’m in no way an expert on ME/CFS or anything, really. I first started writing about my experience when I got ill. It was for self-preservation, something to keep my mind ticking over when my body needed rest.
Close to a decade later and I thought about whether I should share any of it. It initially felt quite self-indulgent, I mean who would want to read a memoir about a nobody.
I asked a few friends this very question.
My friends answered, and the book that appeared the most was Adam Kay’s This Is Going to Hurt.
The phenomenon of Adam Kay was still at its apex around the time I first got ill. And with more time in isolation on my hands, I succumbed to the constant recommendations.
Now This Is Going to Hurt is my favourite type of writing. It’s funny, it’s got heart, and it’s uncovering an unknown world.
And Adam Kay is incredibly easy to root for.
The way that Americans champion veterans is exactly how we Brits regard NHS workers. Adam Kay was on the front line, shedding blood, sweat, and tears to help members of the public.
How could anyone compete with that?
In fact, I’ve got many a horror story about the NHS myself, and my conclusion isn’t quite as glowing as Adam Kay’s. As blasphemous as that sounds.
So, putting the Adam Kay admiration to one side, I guess the question is, ‘Am I someone to root for?’
Life before my diagnosis was a privileged and unremarkable one. Born to Glaswegian parents who moved to London before I was born. I attended a good school, a good university, and had a good job.
My weekends were taken up by watching sport, drinking with my friends, and going to gigs or the cinema. Again, very unremarkable.
I wanted to make the next step in life, but to do so, I would need a promotion. Therefore, I decided to throw all my attention into work.
And here we are.
When I started to feel ill, I decided to write a diary (well, notes on my phone). Eat your heart out, Adam Kay.
September 18th, 2018
‘Progressively feeling worse throughout the day. My body is feeling weaker, and the headaches are so debilitating, I have no choice but to rest in bed.’
September 25th, 2018
‘I woke up at 4am and had complete disassociation with touch. I tried to put on some socks, and whilst I was looking at my hands touching the socks, I couldn’t feel anything.’
October 7th, 2018
‘I started searching what celebrities had ME/CFS and found some interesting names. Some even range as far back as Charles Darwin and Florence Nightingale. Supposedly Stevie Nicks, Cher, and even Flea had it. They’re all energetic and still going strong. Holding onto hope from anywhere at the moment.’
December 23rd, 2018
‘Really struggling to communicate with anyone. My speech is starting to slur, I even had someone at work ask if I was drunk. When I’m really exhausted, sometimes all I can manage is a sigh.”
January 8th, 2019
‘Work is incredibly tough. My boss asked me to read an email out to him, and I looked at the screen, and the words were shaking from side to side.’
January 14th, 2019
‘I feel as useless as a lifeguard at the Olympics. I got told off by my boss for the wrong wording of an email. Stress isn’t the cause, but it seems to worsen the symptoms. I started to feel even dizzier and ill when he was shouting at me.’
January 22nd, 2019
‘I learned about something called Post-Exertional Malaise (PEM) today, and we get it when we push ourselves just a bit too far. I never knew this was a part of the illness. It feels like a shot of flu all over your body, my body rumbles and fizzes, and I need to lie down as quickly as possible. It’s fucking horrible.’
January 29th, 2019
‘Can you think of anything more mortifying and humiliating than causing PEM from having a wank? The indignity of lying in bed afterwards, knowing a quick act of pleasure directly caused a PEM crash and is the reason you feel so awful now. Didn’t happen to me!’
February 19th, 2019
‘I told my boss about my illness via email, and that I would have to start managing my schedule better. He took me into his office and suggested that I start playing squash as a cure. I know there’s a lack of understanding of ME/CFS, but that’s got to be up there.’
February 27th 2019
‘Animated film idea, Octopus wants to be a ballerina but can’t afford that many ballet shoes.’
Some of those diary entries aren’t very fun to read. The last one could be a billion-dollar franchise though.
Reading through my past entries can be difficult, but it also helps ground my perspective. A running theme through the even darker entries, is a sense of loss for my life before. And a feeling that I had been hard done by.
But I think differently now.
There’s an alternate timeline in which I didn’t get ill, and I sit here today with more achievements, more Instagram photos and more meaningful memories. But I’m not happy. I could be lamenting false moves or unfortunate circumstances. I could have been in an accident, or I could have got another illness.
There’s absolutely no way of knowing how my life would be different.
But I guess what I do know is the last seven years haven’t broken me. I’m still in the ring; I’m still rolling with the punches.
I’ve improved in ways too. I’m more patient, empathetic and a lot more open. That’s got to mean something, I think.
So…am I easy to root for?
Shit. Who knows.
But maybe that doesn’t matter.
Hopefully I peel back the curtain for those who can’t relate. And for those like me, living with a chronic illness, maybe you catch a glimpse of your own reflection in the chapters ahead.
LIFE IN A CRASH 