My Story

A three-shot oat-milk flat white (‘the usual’ by now), two max strength Lemsips, 26mg of nicotine in my lip (that’s about 2 ½ Marlboro reds) and I’m ready to hit the road.

This is Monday. This is the corporate hustle, I tell myself as a bit of tobacco juice trickles down my throat and I suddenly feel like Clint Eastwood in a Fistful of Dollars, a stoical cowboy standing proud amongst the sullen suits as they try to hide their misery behind their Metro newspapers. The Central line pulls out of Liverpool street, destination: Opportunity.

The carriages cannon through the blackness. My thoughts bounce along –“Don’t give up. You need to work hard to get what you want. Tough times don’t last. An 11pm cover letter sent out and an 8am call with a recruiter the next morning. Let’s get that new job. Yeah, I’m a hustling. I feel exhausted and ill but that’s normal. A bit of wear and tear, that’s what working hard feels like.”

“Wait…that last part doesn’t sound right”, I think to myself after it hits me that I haven’t absorbed a word of my book that I’ve been reading for the last half an hour. Suspicion turns to worry. I notice the headache has somehow persisted despite the morning MOT, and is now pounding in sync with the rhythm of the train on the tracks.

Sluggish, I tap out of the barriers somewhere in zone one. The bright grey light blinding, the noise oppressive. I can’t go on. This flu, whatever the hell it is, has gone on for the last two months. Something has to change.

That day was my last day at work. I decided to take time out and focus on recuperating. In some ways it was already too late.

Pushing through illness and exhaustion: A common root cause

This may feel like a relatable story for others with ME/CFS. Pushing through tiredness or ill feeling for a while, and then suddenly finding that your body has given up.

I was like other ‘achiever’ psychological sub-types. Unrelenting and ambitious, I was always pushing myself to reach whatever lofty goal I had set for myself. I worked hard. I lived an active and alcohol-rich social life, and exercised 6 times a week as a boxer. I was a Duracell bunny on a hamster wheel.

This had a darker side. And this was what was largely responsible for my poor-health.

I never felt satisfied and always felt I could improve. Sometimes I would berate myself into self-loathing if whatever I was doing did not meet my unattainable standards.  Treating myself, whatever that was, had to be earned. ‘Self-care’, ‘Self-compassion’, ‘work-life balance’ were blacklisted from my daily vernacular. They were obstacles to my fantasies of achievement and success, which were often externally defined, and which probably reflect a set of deeply embedded feelings of inadequacy. Basically, I had some pretty serious perfectionist tendencies.

At the beginning of 2019, I found myself imprisoned in a stressful, toxic, emotionally draining job and had become desperate to leave it. Naturally, my ‘achiever’ grabbed the wheel to make this right – I set a personal deadline to get a new job and then placed all of my self worth into meeting that deadline. I worked my ass off, doing all the job-application minutiae in the late evenings, early mornings, and all weekend, trying to fit in a boxing workout whenever I had free time. I did all of this while my body was quietly fighting glandular fever, brought on by the Epstein-Barr virus (though I found this out 5 months later).

My body was like a plane in a vertical tailspin with no fuel and I was the pilot announcing that it’s just some minor turbulence. My body couldn’t take it. I had to descend into what was, and still is, a long stop in the pit lane.

Diagnosis and discovery

After a few weeks of boomerang with the doctor and house-bound horizontality, I felt a little better but still not what I was before. The blood tests had confirmed that there was no active virus, and for weeks I was sleeping 10 hours a night and eating like a Zen master. How could I not have recovered?

After a doctor’s recommendation to do some exercise left me feeling like I had just contracted Dengue fever, I knew something was more seriously wrong. I went back to the doctor with more detail and conviction.

They said it was ‘Post Viral-Fatigue’.

…What the hell is that? A big fat syrup-drenched waffle is what it is, I thought, a term thought up by puzzled doctors to explain away their lack of understanding about a set of symptoms.

At least I had a name though. Something I could say to my employers and to people when they asked why I was off work, or leaving the pub early, or unable to walk fast or for more than 200m at a time, or unable to talk coherently, or just generally feeling grouchy and misanthropic – More Gran Torino than A Fistful of Dollars.

What started as a curious tumble into online doctor websites became a fully-fledged critical analysis of everything Google had to offer on the subject. I was determined to find out more about this fatigue, and more importantly, how to shake it off. After what felt like researching for a doctoral thesis, I found that Post-Viral Fatigue is a term often used to describe ME/CFS-like symptoms that have been brought on specifically by a virus, but which aren’t present seriously or for long enough to be considered ‘chronic’, a benchmark arbitrarily set at 6 months. PVF and ME/CFS are practically the same thing.

For each and every definition and associated list of symptoms, I ticked all the boxes. That was it, I concluded. I had ME/CFS.

This was the bitterest of pills to swallow. I was downtrodden. What made it worse were the recovery testimonials I read online – “24 years in bed and now I can live again”. They whispered to me that my life as I knew it was over. No career. No social life. No more controlled punching people in the face. Relegated to a life of Netflix, wellness wankery and sofa-rooted nihilism. What a riot.

Acceptance and the long winding road to better health

Acceptance is the first and most necessary step towards improving. It is also the hardest.

I was a sad couch potato for a while. I hated the situation I was in. Like a mad scientist I was still brainstorming possible ways I could progress in my career. After months of feeling stuck and frustrated, I eventually accepted that I couldn’t continue living my life as it was, that I had ME/CFS and it was to be taken seriously. I knew I needed to kick the ‘achiever’ to the curb and listen to my body. I needed to focus on what really mattered. And it was at that moment that I began my recovery.

An experimental journey through the weirdest depths of the wellness universe, countless therapies, restrictive diets, and 000s of supplements – over the next 7 months I tried everything under the sun to get better. I learned a whole lot and found some things that worked. Though I am still a way off a full-recovery, there has been considerable progress…Which brings us to the purpose of this page.

What’s your story? Please comment below or get in touch

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