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:
Along with PVS (post-viral syndrome), there's the very real possibility that some chronic sufferers, like myself, suffer from PTS (post-treatment syndrome). I cannot *prove* that my own chronic condition is the result of a very ill-advised treatment with strong antibiotics and NSAIDs, but I have good reasons to believe it to be true. In both cases the immune system is thrown out of whack. The difference is the cause (nasty virus in one case, nasty medication in the other case).
Damn! I had something years ago that was almost exactly the same as what you are describing. You are absolutely right about "fatigue" being the wrong word. The best word I've found for the feeling I was stuck with for 3 years is "malaise." It's feeling *sick*. Malaise is often accompanied by fever, fatigue, headaches, nausea and whatnot, but it is not any of those things -- it's just a deeply unpleasant sick feeling, and you can have it in the absence of all the trimmings. I was lucky -- my syndrome just faded away after about 3 years.
I totally get it about how hard it is to come up with plans to try, and then implement them. Of course, you have excellent reasons to do that -- but you also feel crappy and low-energy, and the plans may look as bleak and gray as everything else. I think this blog is an excellent way to hold yourself accountable and get support.
OK, so I have 3 ideas of things worth trying. You may have tried some of them already.
-Find out what kind of flu was dominant when you had the illness that kicked off this syndrome, and get vaccinated for it. Maybe even get the extra-strength version for seniors. I'm suggesting this because a fair number of people with Long Covid felt better after getting a covid vaccination. This is analogous. Of course, it's also risky -- what if it makes you worse? Maybe don't try this one before trying safer options.
-Take a course of whatever antiviral med works best against flu or whatever you thought you had. Same logic as above: Some people with Long Covid say they were helped by Paxlovid. And if you're going to try this one, do it intensely -- like do 2 courses back-to-back.
-Both of the above require the cooperation of doctors. If you can't find someone who is willing to try this stuff, consider paying for a "boutique" doctor for a year. You'll have to ask around to find out which of the boutique docs are willing to prescribe off-label in the ways I'm suggesting.
-Sleep as much as you can. Use blackout curtains, earplugs, special mattresses, weighted blankets --anything that helps you sleep better. Do not use an alarm clock. Sleep until you wake up naturally. My reason for suggesting this is that I have had some success with using prolonged sleep to turn the corner on colds and the flu. Sometimes when I'm sick I do my best to sleep 12 or 14 hours, maybe using a dose of benedryl halfway through the night to prolong my sleep, I often wake up feeling mostly recovered. I'm not *sure* the mega-sleep theory is valid -- maybe 8 hours on those nights would have worked just as well. Also, I have always been very intolerant of sleep deprivation. If I'm a couple hours short on sleep, I really feel a LOT less good, so maybe sleep is more important for keeping me in good shape than it is for most people. Still, long luxurious sleep seems worth a try for you, and at least it's not a fatiguing treatment! Oh and about the alcohol -- it damages sleep architecture. So do benzos. I'm sure you know that. So what you need to get yourself is a series of long "architecturally sound" sleeps.
I'll come back with more ideas as I have them.