This is going to be mostly my personal experience with long covid, interspersed with bits of knowledge I receive from the various medical staff that are helping take care of me~ I'll try to make sure I just reply to the last post so people new to the series can look back at the old posts easily

Hopefully, it can help people understand some of the effects of this rather widespread, invisible disability that I and countless others have to fight day in and day out and empathise with those that have it

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One of the physical symptoms is that I'm dimished to something like 20% of my previous max stamina, with activities costing multiple times what they previously did alongside a much slower stamina recovery

Grocery trips are prohibitively expensive on the stamina now, and I need to sit for 30~45 minutes before I can even put groceries away...showers require most of a day's worth of stamina (baths are a little better but harder to wash my hair in... cooking? I have to have a stool in the kitchen and even then, the parts that require standing drain my stamina quickly

and honestly? I'm one of the lucky ones...Physics Girl (youtube) recently managed to stand up for the first time in a year or two, and that's been both a sobering reminder of what long covid can do as well as a source of great hope for my own recovery, though I'm ready to fight it for years (on top of the 1.5ish years I've already had to deal with it).

Back on the topic of physical stamina, the worst part is that exercise doesn't work. For a healthy human, using up 105% of your stamina leads to increased stamina after recovering for a day or two. For long-covid patients, exceeding our (now much smaller) stamina capacity *decreases* our stamina capacity

You can think of it as an injury paradigm in that overloading a leg recovering from a recent breakage will re-injure it, not strengthen it

and that's probably enough for a first entry

#Covid #Covid19 #LongCovid #Health #Disability @longcovid

Oh how much changes in 2 months.

Not for the better, mind you. Definitely not for the better.

Today's post is going to be a little insight into what we've learned through my physical therapy. There's a speech therapy component to it as well, but we'll get to that in a future post

What's changed from last time is that my physical stamina has continued to decline, and gotten to such a point that I've had to completely abandon any and all violin performance. That was the love of my life, my purpose, part of my identity, an outlet for self-expression, and...also the singular thing that my income was based on. Turns out that having all of that stripped away all at once with no clue whether I'll ever get it back or not leads to depression (moderately severe, according to my therapist )

Well, today, I learned why. We did some testing on what I was physically able to handle by testing my pulse and my perception of my own exertion and fatigue. My resting heart-rate was the usual 105ish bpm (long covid pushes resting heartrate up a bunch, evidently), 110ish after 2 minutes of walking at bodyweight (exertion: 6/10), and 125ish after 4 minutes (exertion: 7~8/10). One of the other symptoms we kept track of was the speech test, paying attention to whether I could speak while walking without taking big, gasping breaths due to exertion Oh, and one of the symptoms I noted was that my muscles through my thighs and butt started to shudder as if I was on the last rep or two of a weightlifting set, eeking out the very last of my capabilities.

The conclusion she came to was that, in my current condition, the best plan was to walk 1~2 minutes 3 times a week while paying attention to the symptoms (I need to get a pulse monitor, I guess). *If* my body can handle this without crashing or having post-exertion malaise (PEM), I could slowly increase this by a minute or two every week or two.

Did I mention using the transit system to get there and back required me to walk about 30 minutes with the added weight of my bag and water? (at the very least, the next two visits are going to be virtual, which will be nice)

Soooo with this info, I get to look back at every violin stream I did from Jan 2024~Feb 2025 and see that every stream I did in my attempt to make sure I could survive, I was injuring my stamina more and more, leading to my current condition, I guess

#Covid #Covid19 #LongCovid #Health #Disability @longcovid

I finally got a follow-up with my long-covid specialist (it took so long to get a second appointment because I really needed to get a few physical and speech therapy appointments in, which also took a while and had complications )

Here's a quick TIL from my after-visit report:
・Drinking water quickly rather than sipping helps expand blood volume more rapidly, mimicking the effects of IV saline. (Interesting to know, especially since I tend to sip, not chug )
・Drink 2-4 liters of water per day. (Send help )
・Knee high compression socks come in variable strengths. The weakest strength is 15-20mmHg. Pick the most tolerable and helpful for you. (Medically sanctioned thigh-highs? )
・Think of activity as a cycle of action/relaxation/action/relaxation/action/relaxation. (What I heard: "You're useless to the party if you've got no mana, go regen some mana ")
・Sleep: Consistency is key - try to have the same bed time and wake up time every day, and stick to it. (A bedtime within ±6 hours of yesterday's counts as consistent... ... ... right...? )

I do make light of the advice, but a lot of this is genuinely interesting to think about and try to slowly implement in my life.

Medically sanctioned thigh-highs

#Covid #Covid19 #LongCovid #Health #Disability #MECFS @longcovid

Dear Cook's and Chefs 🧑‍🍳 of the world,

Please, I know you love your chosen profession, and you mean well, but if you've had covid and lost your sense of taste and smell, please, please, find another line of work because I don't think I can tolerate another meal that tastes like you dropped an entire box of salt into it.
My sinuses and throat burn, eyes water, because the first bite sends me into a severe coughing spell.

🥺

#Food #Covid