The year I stopped
by Joey Imlay
Friday 17th November 2023
On reflection, 2023 hasn't been the worst year of my life. Top three, though. Definitely. It was meant to be the year I got into gadgets, IoT things, mucking around with Raspberry Pis and Arduinos and that sort of thing. Instead, it became the year that I stopped.
A little before Christmas 2022, I started feeling tired. Not your typical "woman in her late thirties working a 9 to 5" kind of tired, but a deep, limb-heavy dog-tired at the end of every working day. Most evenings I was too tired to play my usual video games after work. I was going to bed earlier and getting up later, still exhausted. Worse, doing anything physical at all made me feel worse, not just in the moment, but for days afterwards. It felt different. It felt wrong.
Nothing had recently changed for the worse. I'd just started working with a new client and I was excited about the project. It was the first time in a long time that I'd felt like a proper dev again, after a... shall we say, challenging eighteen months, twelve of which culminated in a mental health crisis over the summer. I'd had therapy to unpack it all and I'd recovered, and now I was ready to enjoy doing what I do best.
Seems my body had other ideas.
Ever the problem solver, I started looking for solutions in January. Investigations into my thyroid revealed a benign cyst that was treated immediately, but had had no effect on thyroid function. Further blood tests revealed no sign of diabetes, not even pre-diabetes.
(If only the blood tests had ended there. I'm now convinced that the NHS is a secret cabal of vampires who come up with any excuse they can to draw blood.)
By this time, I'd developed a constant feeling of sea-sickness, as though the ground were constantly moving underneath me. Work was starting to become difficult. I found myself starting to stumble at morning standups, to make rookie mistakes in my code. I was taking naps at lunchtime - I've never been a daytime napper before.
That was when my GP first suggested the idea of ME/CFS. I was warned that diagnosis would be a process of elimination, that I would have to see a lot of specialists one by one, but that all the signs were pointing to this condition.
So the treadmill started. It goes like this: Get referred to a specialist. Await an appointment date, invariably weeks into the future. Await the appointment. Specialist orders a round of blood tests and some kind of investigation. Await an appointment for the investigation. Have the investigation done. Await blood tests (always slower). Have bloods done. Await follow-up appointment with specialist. Specialist says that everything's fine. Get referred to the next specialist.
On it goes. On and on and on.
I struggled on through February, then March. I even managed to attend the Reframe conference in March, although by that point I was very unsteady on my feet. I wish I could tell you anything I remember of those two days - truth is, I don't remember anything. My memory had already started to deteriorate.
Then, two weeks after Reframe - mid-April by now - I logged on one Monday morning, more exhausted than ever. I opened up the file I'd last been working on -
...and I couldn't read it. I could discern words and punctuation, but I couldn't have told you what kind of code it was, or what it was meant to be doing. It was as though my train of thought had hit a brick wall.
One of the single most terrifying moments of my life.
I wouldn't return to work for the next four months. I pulled out of all the events I was due to get involved with. I only left the house for medical appointments. I hired a cleaner because I couldn't move around my apartment without leaning on the walls. I quit drinking because even the smallest alcoholic drink was making me sick. I quit gaming because, even when I was strong enough to sit up, my eyes couldn't stand looking at the screen. I spent a fortune on takeout and cab fares. I slept a lot, because it was the only thing I could do.
It was a scary time. I didn't know whether I'd be this way forever, whether this was my life from now on.
The official diagnosis came from a rheumatologist in May - quicker than expected, but it was good to have a definitive answer. However, there is no treatment for ME/CFS. I still had many, many specialists to see about my most acute symptoms - but in terms of the fatigue and the brain fog that had peaked that day I stopped being able to read code, figuring out what to do next fell entirely upon me.
Since the beginning of 2023 I have seen three ENTs, two rheumatologists, two occupational health therapists, a haematologist, a physiotherapist, an audiologist, and most recently, a pain specialist. I've had two MRIs, an X-ray, and quite possibly every blood tests that exists, at least twice. (I'm telling you. Vampires.)
And I'm still not done. I probably never will be.
The only thing I can credit with getting me back to physical stability - the only treatment I've had, really - is acupuncture. I had fortnightly sessions for six months, which brought my energy levels up to the point where I could recalibrate myself. I can't explain how it works, and truly I'm content to never understand it. I've also attended a support group for folks living with chronic conditions, and I've been seeing a therapist regularly. I'm very, very grateful for the health insurance my workplace provides. It's been stellar.
In mid-August I began a slowly phased return to work. I've had to learn not to compare myself with how I was this time last year, but instead to look at how far I've come since that horrible day in April. I've learned to work strictly within my energy envelope, and to show myself grace on bad days. It's not been easy to make myself understood - heck, even to understand myself some days - but I'm making good progress in coming to terms with my disability.
And then, one last investigation, for now.
Last week, I had an ADHD assessment. I wanted to know whether the issues I'm still having around concentration and distraction were as a result of ME/CFS or from an underlying, undiagnosed case of ADHD.
The result wasn't quite what I expected. After a gruelling conversation, my assessor very gently told me: "Nothing that you've told me indicates that you have ADHD. But would you be surprised to learn that you're showing some very strong signs of being autistic?"
It was more surprising to hear that I didn't have ADHD than learning I'm autistic, truly. Like ADHD, autism often goes undiagnosed in women until well into adulthood. Experience has taught me that I've always thought differently from most folks, but having a name to put to that difference feels really good, even only after a few days. I'm looking back on past events through an autistic lens, and suddenly things make sense in a way they haven't before. It isn't going to take much to get used to the idea.
For now, my official assessment for autism gets added to the list of assessments I'm still waiting on. I still haven't seen an ME/CFS specialist yet, although goodness knows they've probably been swamped since the pandemic. (Long Covid and ME/CFS are, as I understand it, functionally identical. It's only long Covid when it's definitely been triggered by Covid - which, by some miracle, I'm yet to suffer from. My pain specialist and I are pretty certain that the mental health crisis I suffered in 2022 triggered my ME/CFS.)
So. 2024 will be the year that I process all of this new information. There are new strands to weave into my identity, and new routines to live by. I'm still getting used to having to take rest days after socialising, something that I'm still frustrated by. Maybe a year from now, it will seem normal and I won't give it a second thought. But right now, ME/CFS still feels like the gorilla in my house that I'm still trying to ignore or evict, rather than to make room for.
For now, though: a re-introduction of sorts is in order.
Hi. I'm Joey, a disabled, neurodivergent front-end software engineer, writer and speaker. I make beautiful, accessible, and highly performant websites, and I need a lot of sleep.