It’s like Long COVID

Living with a Long-COVID-ish illness since way before COVID

Seven years ago, in the spring of 2015, my wife and I got really sick.

It was a memorably nasty respiratory infection, and we struggled mightily with it.  We will never forget struggling to walk up a small hill together, a couple blocks from home — six weeks into the disease, whipped by a slope less challenging than a couple flights of stairs.

K took another month to reclaim her vigour, and I just never did. I have felt ill and fragile ever since, especially after exercise. Ten minutes of lifting weights can make me feel like throwing up and cause days of soreness.

Today, I am a somewhat disabled middle-aged wreck of a person, trying to fit a bit of living into the cracks between symptoms and rough patches. I am making a last-ditch effort to save my own ass, and this is the first post of a newsletter where I will document my progress — or lack thereof. Failure is an option.

Thank you, science fiction nightmare pandemic!

My strange condition was once tricky to explain to people. Now it’s easy: it’s like Long COVID. Those four words now describe my predicament better than anything else I can say.

I had two other major health challenges that same spring — there was the throat thing, and there was the benzos thing — which muddies the diagnostic waters to this day. And there’s my lifelong struggle to get enough sleep, thanks to a neurological sleep disorder.

So there are several possible explanations for what has happened to me.

But, most likely, it’s just exactly what it looks like: that infection wrecked me.  Just like Long COVID.

A little about Long COVID

Long COVID is probably a post-viral syndrome: poorly understood immune system fuckery in the aftermath of infections, basically. Scars from a battle with a pathogen, and not necessarily a major one.

COVID didn't invent this phenomenon, it just made it headline news. It had been an obscure idea on the frontiers of medicine, one of many attempts to explain some cases of "chronic fatigue syndrome" or (more precisely) myalgic encephalomyelitis.

Now it’s a household name.

I never embraced CFS/ME as a way of explaining what I was experiencing, partly because of the stigma, of course, but also because it just didn’t actually explain it well: my case involved so much malaise and pain that putting the emphasis on fatigue just never seemed accurate. (To be clear, many cases of severe CFS/ME are exactly like that … but people do not understand that about CFS/ME. It should really be called “chronic holy-shit-I-feel-fucking-awful syndrome.”)

Saying “it’s like Long COVID” largely solves these problems for me: most people actually get the right idea. They can see that I mean it’s an actual illness and that it feels like one — not just “really tired.”

I cannot give up yet

There are days when I want to resign myself to my fate, and never waste another second or another breath on wondering what’s wrong with me or what I can possibly do about it.  Maybe I should just live the rest of my life as well as I can.

I may do that someday, but I cannot do it yet.

I have not really “tried everything.”  Not even close, honestly.  There are still some obvious diagnostic and/or treatment experiments that I have neglected. That neglect is embarrassing to me as a curious human, as a science writer, and especially as the publisher of PainScience.com.

Laughably, my failure to actually try everything over the last seven years even supports the argument made by some of my haters: arrogant asshats who have publicly declared that my failure to cure myself must mean I’m incompetent. 🙄

I don’t think I am incompetent.  But I have failed to pull on every thread — thanks mostly to the fog of nausea-tinged weariness and strange stabbing pains.

How I will try to save my life

After seven years of largely disorganized flailing and red herrings, I am going to “reboot” my effort.  I will give saving my ass one more serious try, probably for a year or two.

What exactly does that mean?  What am I going to do? (Links are to subsequently written posts that elaborate.)

• Reconsider all the possible ways to explain chronic fatigue and pain. There will eventually be a master list of diagnostic hypotheses, carefully ranked by fit and scientific plausibility.

• I will also recruit medical assistance as needed for testing, and experts for perspective and insight. [Also still pending. Doctors scare me these days.]

• I will prioritize every major treatment option for the top diagnostic candidates, ranking them by accessibility and plausibility, and then start checking them off, one by one.  In some cases. [Also still pending, but I’ve also made plenty of headway, lots of preparations.]

• Rigorously log all symptoms, interventions, and more: any potentially relevant factors, so that I can look for patterns over time.  What do symptoms and rough patches correlate with?

• I will establish some fitness benchmarks and goals, the better to know if I’m winning or losing.

• Finally, I will pursue the greatest possible overall health and fitness — not just because I need every possible advantage, but also to eliminate “noise” from self-sabotaging bad habits like alcohol. Obviously this will never be done, but I have gotten a good start on it.

Quitting alcohol is one of the best simple examples of how I have not tried everything. I do not think alcohol is the cause of my problems, and I don’t think ditching it will cure me.  But I also know I’m addicted, I know it’s a poison, and I know it’s making a bad situation worse.  My failure to drop it so far makes me cringe. It’s things like this that I simply must try before I can give up — along many more medically specific efforts.

I am painfully aware that all this could fail.  I may not be able to save myself.

Come along for the ride

Not only am I going to try to save my ass, I’m going to write about it, and thoroughly.

wThis newsletter will not be neglected (12 posts so far, as of early fall 2022). I will write posts because I have no choice — I don’t just have to do this thing, I have to actually write about this thing to do it because I, being me, always have to write about things before I can do them. This is how I plan and learn.

This is not my first or second or third choice for a big writing project at this stage of my life. I’d rather be finally trying to write some science fiction novels, or just working on an endless to-do list of projects for PainSci.

But life had other plans for me, and I have to do this — and I will do it with an audience.

Polishing content to make it suitable for publication is going to be more work than private journalling and logging… but I also think it demands more rigour, and will legitimately push me to and think more rigorously about what I am doing. If it’s worth doing, it’s worth doing well!

Key posts

If you’re joining us late and want to catch up without reading everything, here are a few of the most significant posts so far:

• All the diagnoses

• All the symptoms

• Tolerating exercise intolerance

• Investing in health & fitness