Part 5: Finding a new baseline, understanding fatigue
September 2022 - November 2022 (Month 9-11)
After coming to terms with the effects of exercise and the beta blocker, I shifted gears and went back to pacing and resting as much as I possibly could. I stopped all exercise, laid off most supplements as well, and focused entirely on finding a stable baseline from which to rebuild, based primarily on a foundation of rest. With the beta blocker on my side, it felt like it was finally possible to rest for real. I slept as much as possible, continued my daily breathwork and meditation practices, read even more books, listened to podcasts, went on slow, gentle walks and just generally cut back as much as I possibly could. Unlike in the earlier phases, this just felt right. I was still having crashes, days where I would lie mostly in bed, but slowly they got fewer and further between as September turned to late October. By November, this rest and pacing was paying off, and I recorded my lowest level of symptom severity yet that month. Things were looking up.
With a foundation of rest and pacing, I looked to address the biggest issue that I was still facing — fatigue. November was good, don’t get me wrong, but daily fatigue will eventually get to you. We haven’t really talked about fatigue yet, have we? What exactly is fatigue? “It’s like, when you’re tired all the time”, people say to me. “Oh man, that sucks. I had so much fatigue after my infection too. Like two weeks after my infection, I’d go to the gym for an hour and I’d be too tired to make dinner later that evening!”. Yeah, no. I mean, for sure those are examples of fatigue, but when people with Long COVID or ME/CFS talk about fatigue, it’s a whole other ballpark.
Imagine you have a battery in you, and a healthy person has a battery that drains to maybe 30% during the day, and sleeping refills it back up to 100% (or close to it). Someone experiencing fatigue or a chronic, “energy-limiting” illness has a battery that does not recharge back up to full charge. They go to sleep with a battery entirely drained, 0%, and when they wake up, it’s back to their energy limit of maybe 30%. Think about this — they wake up as tired as a healthy person was when they went to sleep the previous night. In order to make it through the day, manage activities of daily living, maybe socialise or care for others, they have to pace themselves. They choose carefully which activities matter the most, which can be postponed or delegated, and which will just not be done at all. They do an activity, drain the battery to 10%, rest, charge to 20%, and repeat. We talked about PEM in a previous section and you can think of PEM roughly as your battery hitting 0% and dropping into the negatives, damaging your body and stealing energy from tomorrow, the next day or the next week or month in the worst cases. Imagine that for a second, going out for a walk, walking a little bit too far or too long, and knowing that the pain you feel right now is going to cost you tomorrow, and the day after that, not just in more pain but in a loss of function. You’ll skip a shower because standing in the heat is too tiring, you won’t play a video game because it’s too stressful, and instead you’ll have to just close your eyes and try to ignore all the light and noise around you. Fatigue and PEM are, without a doubt, the most fucked up experiences you can imagine when you go from being a healthy, active person to having to be aware of and choose very carefully and explicitly your daily activities that you never would have thought about before. According to the fatigue assessments that I did, I had moderate fatigue and this description above was my experience for so many damned months. I have nothing but pure respect for people that have battled ME/CFS for months and years of their lives. Their choices are more extreme, limitations more severe, and their hill is just that much larger to climb.
My “ask” of all those reading this, if you haven’t experienced this kind of fatigue, is this. It’s ok that you don’t know what this is like, because you absolutely can’t unless you’ve been through it yourself or cared for someone close to you, but you can respect the needs and limitations of people suffering from energy-limiting illnesses. “But you look fine!”, they will say. These are invisible illnesses, and you can’t know how much suffering I’m experiencing just by looking at me and seeing me smile. Just to be in front of you, socialising for example, you can’t know how much I’ve either sacrificed or what I’ve not been able to do (like go for a walk, or read a book), because I’ve chosen this instead. And that’s my choice (usually), but know that it’s not always an easy choice.
Ok, so now you get it a little bit, what the fatigue is like. In November I was at a place where I was limited to maybe three “major” activities per day. For example, a short (20 mins) walk in the morning, maybe folding laundry in the afternoon, and doing dishes in the evening. That was in November, at my best point in almost a year. So of course I wanted to improve on that.