Thread by @dgurdasani1

It's been nearly a yr of long COVID: POTS, PEM, debilitating fatigue. Here's what I've learned about my illness in the past year👇

1) My body hates heat (despite growing up in a hot desert climate). My POTS is *so much worse* in the hot sun. Just a short trip dropping daughter to school & back can floor me. Humid heat is worse than dry heat

2) Sleep matters a LOT. Poor sleep really worsens the POTS, the brain fog and the fatigue, and my functioning. Unfortunately, I also think my long COVID worsens my sleep. Melatonin, and Nytol help with this.

3) There are periods of recovery, where I can function better- they're often accompanied by periods of rest or reduced activity (time off work, holidays) - but no matter how much I think I've improved, any increase in physical/cognitive activity always leads to a crash

4) Post-exertional malaise is extremely debilitating. While I'd like to be able to predict what level of activity exactly leads to this, I am not able to. Sometimes my body crashes with what I'm able to do without a crash at other points. I don't know why.

5) Things that can lead to PEM crashes:
Walking
Standing
High cognitive load - working, reading, thinking!
Sitting in a chair
Stress
Bright light
Lack of sleep
Loud continuous noise
Heat
Heat
Heat
Did I mention heat?

5) PEM is actually really awful- both physically and mentally - it's unforgiving and can last a whole week, and wipe an entire week from existence. This is why I do everything to avoid it. But in my experience- any period of partial recovery ultimately hits a PEM crash.

I've had periods of partial remission, but they don't last more than a few weeks before hitting a crash, and then it does really feel like you're back to square one. Not all my crashes are predictable based on what I've done. Sometimes, just cognitive load can do it.

I've realised that the only way to reliably not crash is lie in bed all the time under a fan or air conditioning in a dark room, and give up any work, reading, thinking. And I can't do that.

7) It's hard to know what medication helps- as the experience of LC is so up and down. Every time I think I'm getting better, things can suddenly get worse. I had a short period that I felt a lot better after my Novavax, but that didn't last for very long.

Ibaviridine helped reduce my heart rate but it needs to be taken half an hour to an hour before you exert yourself- which can be difficult to plan sometimes! And it doesn't take the POTS away- it does reduce my peak heart rate to an extent though, and so my breathlessness.

I've also been on aspirin and clopidogrel as a trial treatment- I can't say I've experienced massive improvement on them. It's honestly hard to say, because the heat here seems to have scuppered everything in the last few weeks, so I want to continue them a bit longer to see.

8) Migraines are another feature of my illness. Thankfully, they're not very common, but they do seem to happen far more often than they used to (I almost never had them before). And complete darkness, and sleep is the only thing that helps.

9) I now know that I have hypermobility that was probably undiagnosed because it didn't really cause any symptoms. So, this is probably part of the constellation of auto-immune disease (ulcerative colitis), hypermobility syndrome, and POTS (which worsened significantly postCOVID)

People like me are probably at much higher risk of long COVID because of this constellation. I've also had CFS lasting for a few months after a CMV infection in the past (I now think I got off easy that time!). I guess it's unsurprising that I'm at higher risk with my history.

10) Fatigue and lack of sleep can make you eat lots of carbs/sugar to just stay awake and concentrate- which can lead to weight gain. The eating only helps for very short periods of time, so it's actually not worth it in terms of improving concentration!

11) Long COVID has changed how I think about myself and my body. I feel like my identity has shifted - a lot. Sometimes, I can't remember how it felt to be able to do more. I remember it intellectually, but don't remember what it actually felt like physically.

12) There is trauma associated with LC (and what the last few years have been like for me) - I've spend a lot of this year feeling numb and emotionally disconnected from the world and people, interspersed with intense grief that's been hard to place.

It's probably not just the LC, but I think it's played a significant part. I'm now working through it with a therapist (I know I'm in a very privileged position to be able to do this). While it doesn't help physically, it is helping me grieve & process the loss - and not avoid it

Overall, not a lot of useful insights! But I guess in the absence of any real treatments available to many of us, all we can do is share our experiences with illness & document. So I will document, as that's pretty much all I can do right now - in the hope this helps someone