17 years ago I developed/acquired/caught chronic fatigue after having mono/glandular fever. It was devastating. At the time I was a machine, an achiever, a go-getter. I was remotely managing a team of 10 marketers in Oklahoma, for a highly lucrative business I co-founded. I even had a couple of meetings with the CEO of Dell computers in Red Rock, Texas. I was running Freecycle in Australia, which had grown to 100K members. I was the “leader” of a what was perhaps the biggest doomsday cult ever, the 2012 Mayan doomsday. And my wife was often in a wheelchair, which meant I was effectively a stay-at-home Dad – talking them to kinder, shopping, cooking…
I also went jogging to stay fit, and had an active social life.
Then, suddenly, I was quite useless. It is hard to explain, just like maybe how someone with cancer cannot get me to understand the pain they feel.
That I was a runner is useful for my own understanding, because suddenly I couldn’t. It is like there is a button in your brain that you press to do something, and that button stopped functioning. Being told by people to put more effort in was heartbreaking.
Over the years I got used to it, learned how it worked, found responses. I found that it primarily applied to thinks I did for myself. When doing tasks for others I was fine. This is a personal understanding that does not make a lot of sense. My first (and only) career job, like with a salary, I genuinely expected to be fired quickly, from being unable to function. But I was fine. Hence my understanding.
I cannot say if it naturally diminished with time, or whether I developed coping mechanisms, but I mostly shook it off after a decade or so. During the COVID lockdowns I wrote a large economics book, I had the drive. Caffeine emerged as a powerful tool.
Unfortunately I didn’t know that chronic fatigue can be a precursor for multiple sclerosis. And so when I started being a bit gung-ho with my diet (a lot of saturated fat, especially pies, bacon, ribs, t-bone steaks) combined with a lack of vitamin D (I avoid the sun), I allowed myself to be vulnerable to developing a condition most commonly acquired by young women.
The fatigue is back, alongside some other issues like tingling in my extremities, hot and cold flushes, and sometimes tipping over. But fatigue is the killer symptom, so far. Perhaps half of my days I am unable to do much at all. Thankfully, so thankfully, I can drink wine and watch TV. On my worst days, eating (chewing) is hard work and the food disagrees with me.
So, my “end of life” plan, which involves publishing one written book, writing two others, being with my family (second grandchild on the way), travel and activism, now has a restriction – some of my remaining days I cannot function.
I am living on my own and some of those days I yell at the universe out of frustration. My best hope is a medical solution the stops the progression of the illness, but reversing the damage done (nerve damage) is something I am not expecting anytime soon.
I still have fight and ambition, and friends marvel at what I do get done. I’ll achieve my ambitions, it just won’t be as cruisey as I imagined. I might have to punch through some barriers.