For those of you not familiar with the medical term “fatigue,” let me describe it. I experienced it while having mono, undergoing chemotherapy, and again now with #LongCovid.
Think back to a time when you were as tired as you’ve ever been. Not sleepy, but completely physically exhausted, to where you couldn’t wait to get into bed.
Now imagine that you’re in bed, but you don’t feel as if you’ve laid down yet. You’re still that tired. Hours pass. Maybe you sleep all night. You wake up, and you’re still that exhausted. The exhaustion is deep in your bones, and nothing can relieve it.
You can’t think straight. You can’t hold a conversation. You can’t read because holding a book or tablet is too tiring and you can’t focus anyway. You can’t watch anything.
You don’t let yourself cry because then you’d have to blow your nose afterwards, and you’re too tired to do that.
Maybe in a day or two you start feeling as if you can get up and do something, so you tackle the most urgent thing. Or you get a burst of adrenaline and manage to deal with a crisis. Then you’re back to being that exhausted. It goes on for days, or weeks, or months.
You feel as if you should just make yourself exercise a little, and then it’ll get better. You do something small, like a walk. Or you get online for a couple of rousing discussions. The next morning, you wake up exhausted again. You overdid it. Of course you hide this from your friends and colleagues, because nobody wants to hear the same thing every day: “I’m completely exhausted.”
This is what millions of people with #LongCovid are experiencing, and we don’t know yet how to treat it or when it will end.
I had pneumonia in both lungs a few years ago. It was like somebody turned gravity up to about 2.5x usual. Even a month later I remember staring at two shallow steps in front of a door in total dismay and dread, and needing to sit down for a while before I could tackle them. Took over a year before I felt like I could walk normally again.
When covid initially hit, that experience was on my mind often. Still is. I don't think people who've never been dangerously sick have any idea how it can feel.
Wow, this has generated the largest response by far of all my toots since joining a year ago. I wonder if this represents all the people who are suffering extreme fatigue from ME/CFS, #LongCovid, Epstein-Barr, chemo, and other illnesses that can manifest fatigue? If so, that’s a LOT of people silently suffering among us.
@wendynather It's amazingly debilitating. Folks I care about have dealt with chronic fatigue and it's not only really hard to get diagnosed, it's also an invisible, hard, if not impossible to treat, and often unrecognized disability.
It impacts relationships and jobs, and it's heartbreaking to see people you care about barely able to function and unable to understand what changed.
Thank you for sharing and making the struggle public and visible.
got infected with #COVID19 most likely in the hospital while getting #chemo. was in 6th week of twelve. had a two week stoppage to recoup but, nope, now i have #LongCOVID and it's so bad they had to change my infusion because it triggered ANAPHYLAXIS.
people do not get the immunological angle of #COVID: if it doesn't kill you, it will maim you. (which, btw, was part of Nietzsche's point but since nobody really reads his books... anyways.)
@wendynather
There's been a study showing that over exertion causes damage to muscles in people with this kind of fatigue. There has been one I remember showing that if people can exercise just up to the point they know they'll be ok and not crash the next day that can be beneficial. But anyone telling people exercise is the answer to fatigue needs to read this. https://www.nature.com/articles/s41467-023-44432-3
@wendynather I was out of work for 3 years from #LongCovid because I just couldn’t get out of bed. I finally got work last September, but I have to push myself EVERY DAY, and if I push myself too hard, I can’t get out of bed for the next 2 days. I am CONSTANTLY tired, foggy, & forgetful. I will sleep for 9 hours and wake up just as tired the next morning. Hunger has been mostly replaced with nausea.
The kicker is that both my and my wife’s symptoms appeared AFTER vaccination.
Back in the 80s after EBV I experienced this. I lost big chunks of my junior high years and while I learned to be active, functional, and energetic again, the consequences of that period have been with me through most of my adult life. Even recognizing what happened is difficult and lately realized (we collectively have better language and understanding now than in the 80s). I don’t get how people are so cavalier about exposing themselves to this outcome.
@DavidM_yeg@wendynather And when you get sick enough that you’re homebound or bedridden, no one sees your reality. It makes this illness invisible to many.
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