Originally experienced – September 2018 – August 2019
Published on – 26th February 2025
Following my impromptu bathtub sit-down, nothing had improved. Well, I wasn’t physically crawling everywhere, as much as I wish I could.
At the time, I really didn’t know how to explain what was wrong with me. I would just tell people that my body and brain weren’t working the way they used to.
They were now fighting against me.
The exhaustion was the worst—exhaustion that I’d never experienced before. Weights of sand pulling my body down as I tried to go about my day. And when I finally got some sleep, I would wake up completely unrefreshed. It didn’t matter if I slept for 10 minutes or 10 hours, I’d still feel the same.
I likened it to the Greek myth about Tantalus. He was the son of Zeus, and his punishment for stealing ambrosia (the gods’ nectar) was that he was to be hungry for eternity.
Tantalus was made to stand in a pool, under fruit branches, and every time he reached for the branches, they would get further away. And every time he would try to take a drink from the pool, it would recede into nothingness.
This is how I felt—unable to satisfy my exhaustion with sleep, just as Tantalus was unable to satisfy his hunger or thirst.
But despite your feelings on how over the top Tantalus’s damnation was, you can see a clear line from crime to punishment.
But what was my causation? What was making me feel like this?
The next year saw hospital visit after hospital visit. They poked and prodded, took several vials of blood at a time, and did every test imaginable.
Of all the tests, the MRI scans were the most memorable.
If you haven’t experienced an MRI before, it is like being inside a coffin-shaped printer. I was warned about feeling claustrophobic, but no one mentioned the noise.
As the scanning began, I was subjected to a procession of horrible mechanical sounds. Each one lasted about a minute, and just as you’d drowned it out, another even worse sound would come along.
For my second MRI, I was handed a pair of headphones and told that they could play the radio while I was being scanned. As Somebody to Love by Queen came on, I was incredibly thankful I wouldn’t have to endure the organ of bleeps and blobs.
Two minutes into the procedure, the headphones broke, and I was back inside the worst techno rave of all time.
But the medical examinations were a walk in the park compared to my own, mental examinations.
I thought about what could have happened to trigger this intense illness. In other words, how could I blame myself?
I thought about all the knocks to my head I’d taken playing sports over the years. I thought about the weekends where I would drink to oblivion. I thought about my experiences with drugs, mostly experimenting with euphoria at university.
I thought about the stress I had put my body through at work—12-hour days becoming the norm, and those hungover Sunday’s being the only rest I got.
I analysed every decision I had made over the last few years to try and find some logical cause and effect. I hoped that finding this would lead me to the solution, but it never came.
Instead, ten months later, a specialist doctor called an endocrinologist diagnosed me with ME/CFS. A chronic illness that can be caused by post-viral infections, periods of stress, random cell mutation, inflammation, and more.
In other words, they don’t really know what caused it.
After my diagnosis, I took myself into the hospital toilets and started to cry. Not because those five letters “ME/CFS” meant anything to me, but because I was so happy that after months of searching, I now knew what I was fighting.
The tears were joyful and full of hope. A whole year of my life was devoted to locating this illness, and finally, it had a name. There were books written about it, specialist doctors, people who had devoted their entire lives to studying it. I’ll call my friends and tell them oblivion is waiting.
But what I thought might be the end of my journey was just the beginning.
And even though I could now call this thing ME/CFS, I’d come to learn that the name didn’t matter. It didn’t mean they understood it any better. It didn’t mean there was a clear treatment plan or experts who could now help you. It didn’t mean anything.
A name is just a name.
LIFE IN A CRASH 