Circling the long Covid drain

This is day 16 of my first Covid infection. It is so not over.

Late last week, I thought maybe it was mostly done. Hell, I was almost fine on Thursday and Friday — as fine as I ever get, just weary, with some dregs of congestion, and hoarseness (almost certainly worsened by wildfire smoke, ick).

But this week the malaise just came back, as menacing as a bully circling back to make more trouble. On Sunday night I couldn’t handle sitting up and watching TV (“Silo” right now). I collapsed into bed at 9 o’clock. I tried to read, but couldn’t hold up the iPad. I was not too “sleepy” to read: I was too weak to hold up an iPad.

This is what people with chronic fatigue syndrome mean about the maddening inadequacy of the word “fatigue.” It just doesn’t cut it. (Ed Yong did a whole article about this point recently, his last for the Atlantic, and happily no longer paywalled: "Fatigue Can Shatter a Person: Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.")

I did sleep well.  That's one thing I'll say for this disease: I’ve never slept better in my life.

The Malaise Scale measures the feeling of illness. It has been in my head routinely for years now, informally at first, and then much more rigorously in the last year as I’ve made a habit of logging all my symptoms and trying to get “scientific” about analyzing my suffering and its possible solutions. I haven’t felt a “zero” on this scale since mid-2014.

Fears of long Covid now looming

So I hit a 6/10 on my malaise scale last night — almost back up to the “bad flu” level that I started with.  That is some intimidating intensity at this stage. I found it impossible not to wonder: What if this just keeps going? 

Three years into this stupid fucking pandemic, and I know quite a lot about long Covid (all well covered in Eric Topol's review of two major new long Covid papers):

• I know it is absolutely a menace — almost like a pandemic within the pandemic.

• I know it mostly doesn’t back off: most of the oldest cases are still disabling.

• I know it can fire up weeks after you think your mild case is history. Which is really creepy.

• I know it is just part of a constellation of Covid consequences: Covid produces about five times as many complications as influenza.

• I know it has a lot in common with ME/CFS.

But I still do not know if already having a post-viral syndrome is a risk factor for getting the Covid version. I still don’t know if people who already have ME/CFS are more likely to get worse after a Covid infection than other people are to get long Covid. (I considered diving into the research again before publishing this. But I did not have the juice for it.)

There's an obvious logic to the possibility, and it’s scary when you already know how destructive perpetual malaise can be. And when you know all too well that it can get even worse.

Long Covid versus normal setbacks

I should not be too surprised by my current relapse. It has, after all, just barely been more than two weeks, and Covid is a disease of setbacks.

It seems like most people get a Covid setback or two — even some of the mild cases seem to flare up a bit after a while. 

“Paxlovid” rebound was never a thing, is still not a thing, and never will be a thing: it’s just Covid that rebounds, with or without Paxlovid. Dr. Daniel Griffin (who has immense experience treating Covid patients): “Let’s stop with this misinformation. Let’s call this what we called it early on: it’s the second week, it’s the period of the cytokine storm, the hypoxic phase… no ‘rebound’ here.” (TWiV #1006 @ 29:45)

So Covid relapses/chronicity come standard, a strong possibility for any patient.  But this patient?  I am not exactly known for my speedy recoveries…

Long Covid versus abnormal chronicity

I have never wriggled free of any respiratory infection in less than two weeks, and I’ve had a few that took 6-8 weeks to work through. And “full power” eludes me for even longer than relief from obvious symptoms. For 25 years, I watched the effect of colds and flu on my participation in the sport of ultimate, and I never got back to baseline energy levels in less than a month. Even in the early years it was obvious that any cold would make me miss at least 4 weeks of games.

So there was always something about this body of mine — long before the chronic illness began in 2015 — that struggles to get clear of infections.

And surely Covid will be my biggest challenge yet.  In this light, my current Covid relapse seems entirely predictable, and not particularly likely to be an early warning sign of long Covid.

New long Covid versus old “long flu”

I am now in my eighth year of abnormal chronic illness and pain, which was always "like long Covid," long before I had heard of Covid. My trouble started after a very nasty flu in 2015, and so the most likely diagnosis — the first of several major candidates — has always been post-viral syndrome. I think of it as “long flu.”

Thanks to long flu, it have been having attacks of acute malaise for years now — no Covid required!

So what I felt last night may not have even been Covid, per se, but just my normal tendency (since 2015) to suffer malaise when under physiological stress. If it happens to me when I overdo it with exercise, or after other infections, or when sleep deprived… well, obviously it’s also going to happen during and after Covid.

And so how can I tell if what I’m feeling right now is my usual bullshit, or new covid bullshit?

I probably just can’t.

I suspect I am going to be forced to wallow in ambiguous symptoms for the next month.  I am probably going to continue to feel erratically awful … and I will have no idea what it means, or whether it will continue.  I won't be able to tell the difference between long Covid and my usual bullshit without at least 6 weeks of clearly worsened symptoms.  Even if it’s really awful, it could still back off and ultimately get chalked up to just having a bit of a rough time getting clear of Covid.

So it’s probably going to be a long, uneasy September.

Trying everything has been seriously derailed by Covid

Before I got Covid, I was (as usual) feeling behind on this Project Try Everything thing.  I was still trying things, though. I was even getting close to reporting on some of them!

And then Covid happened, and two more weeks vanished.

I had made some progress (at least) four posts:

• The one about how I tried (and failed) to take a really big holiday. But I will try again.

• The one about how I tried (and failed) to beat exercise intolerance with the world's slowest couch-to-5K training plan. But I will try again.

• The one about how it’s going without alcohol. No difference! Not sure I will keep trying.

• The one about how I tried to fix my broken butt… and succeeded.  Which is 90% written, but I’m still not sure I have the courage to publish that one. It’s very “TMI.” We’ll see!

At least two out of three of those are coming, just as soon as I can get 3 days with malaise level of 3±1. So maybe not for a while yet. ☹️