Man, did I need this today.
Often post-exertional symptom exacerbation (PESE) is not triggered by overactivity. Showering, getting dressed, walking, loud noises, busy environments, or multi-tasking is not overactivity. Saying post-exertional symptom exacerbation is like a Boom-and-Bust cycle is patient blaming and unhelpful.
One of my hardest Long Covid symptoms is fatigue. It’s not like doing a long bike ride or a hike, a triathlon or a road race, or even pulling out all the stops to write an article or a syllabus, and then needing to rest up.
It’s more like I do a little too much of basic normal activity and then I feel like I’ve been walloped by a giant wave. All I can do is wait out the days — usually four — until I revert to post-covid “normal.”
Yes, absolutely, I have been blaming myself for PESE, more commonly called post-exertional malaise, even if no one else does. The word “malaise” lingers in my head like a bad earworm. It makes me feel like a helpless, fainting stereotype of romance fiction.
When I was diagnosed with Long Covid, I was referred to a physical therapist, who was very friendly and encouraging, but like most people, didn’t have much experience with Long Covid. She assigned balance and strength exercises, and to avoid over-exertion, told me to track my heart rate carefully: stop immediately if it went over 130, and rest after every set until it went below 90.
My balance improved and I stopped needing the rolling walker. But the brain fog — lousy short-term memory, struggling for words, toiling to come up with whole sentences, difficulty reading academic books and articles, and very wonky vision — was fierce.
The individual exercises didn’t feel hard, especially with so much rest between them. But the thing I didn’t understand about PESE is that it doesn’t emerge until many hours after exertion. Cognitive fatigue hits me immediately and hard, but the fatigue from exercise doesn’t appear until the next day.
Only months later did I stumble across an article about the problems with Graded Exercise Therapy.
Exercise was making me worse.
It finally dawned on me to stop.
The brain fog started to lift. Slowly. Too slowly. More cognitive energy turned out to mean crashing even faster, having to be even more careful. Academic writing, serious reading, a conversation about something I used to teach every year — 45 minutes in, and I’m stuttering, struggling for sentences, freezing up.
After some sedentary weeks, I started back on exercise at one minute. Yeah. ONE MINUTE. I’ve worked back, most days, to a ten-minute walk with the dog (she sniffs many things and makes sure I take lots of breaks) and ten minutes of yoga, mostly seated and prone poses.
The RECOVER research protocol for the Long Covid fatigue sub-group calls for a baseline of 10 minutes or less, depending on ability, of aerobic activity. It also warns, strongly, that people in the trial should stop exercising if they get PESE.
Reading that gave me a lightning-bolt shock of relief.
I’m better at sitting down when I start getting light-headed, or stopping when I’m trying to write an email (or a blog post) and I start to feel the clamp around my head, or not exercising at all if I feel worn out. It’s a work in progress.
It was so helpful to see the written words that say I’m not pushing myself too hard, but —
the basic activities of everyday life are too hard for me.
Deep breath.
I have not been able to recover from Long Covid through sheer force of will.
It’s okay.
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