A bad year since my last post
So long that the delay is now the story.
New here? Maybe you don’t even remember subscribing! I did a couple dozen posts in 2022, 2023 about trying everything to wriggle free of my long-covid-ish health problems — a good idea, which attracted many subscribers. But then? I fell silent for most of a year.
Is this newsletter even still a thing? “Is this thing on?” 🎤 *feedback squeal*
You have 3 guesses what happened and the first 2 don’t count
I got my arse handed to me, of course! I got worse. 2024 sucked. I felt unable to be methodical, organized, or proactive. I was struggled try much of anything, let alone “everything.” I endured.
I will keep trying, but probably not “everything”
I thought this project was a great idea just three years ago, but today it seems like a cruel delusion, and another life lesson learned the hard way.
In early 2024, I’d already given up on detailed, methodical logging of symptoms, which had been a cornerstone of my efforts for about 18 months at that point. But now I’ve definitely given up on “everything” else. It isn’t possible to even “try” a bunch of things, let alone blog about them, while your health is declining, and you’re trying to make a living. Just nope.
And that’s the disappointing reality for a compulsive writer who is still relatively functional for this kind of illness.
So, yes, this newsletter is still a thing
But less of a thing. I will share some experiences and ideas, but thinner reporting on fewer experiments — because they will be less newsworthy.
“Try a few things, share even fewer!” isn’t a great sales pitch. It wouldn't have gotten as many subscriptions as I have here, and I’m sorry for that “false advertising.” But hey … we all have too much in the ol' inbox anyway, amiright?
Three scraps of good news coming
Evading exercise intolerance! Despite the pain, I have made my first real progress with increasing my exercise in years, working with the “sneaking past exercise intolerance” idea. I’ll be sharing how I think I pulled that off. One tool was…
Powered biking! 2024 was the year of the e-bike for me. I’ve seen great practical benefit from that technology, including the way it has helped with the last item.
Actual medical help! Am I dreaming? There has been major good news about my Actual Major Medical Diagnosis of “familial hypercholesterolemia," AKA insanely high cholesterol because genetics. I must say, it’s quite the refreshing novelty to be taken seriously by doctors for once. 😜 (But not about my mystery illness — that would be asking too much.)
I'm interested in hearing about sneaking past exercise intolerance, since I, too, must find a way to sneak exercise past "boss" ailments which have proved difficult to treat by anything other than increased fitness, but which also stand in the way of increasing fitness – especially restoring fitness I've lost since childbearing.
My "bosses" aren't classic exercise intolerance, but instead hEDS injury risk, atopic respiratory problems, and the frequent ooginess that comes with both hEDS and atopy. My kids bring home plenty of "minor" communicable diseases that don't seem so "minor" to me – for example, when my local BigHospCorp's urgent care (negligently, though I doubt I can muster the energy to take legal action) delayed treating me for strep this February, I got reactive arthritis. Fun-o!
Seems I must learn to change my exercise preferences. I like the muscle-feel of more resistance than my joints (less supported by bracing muscle than they used to be) can currently handle. To avoid riling my joints (including one bad knee, and after February, a bad... thumb – now grip strength is a limiting factor), it seems I must avoid loads that conveniently challenge my muscles, in favor of smaller loads used inconveniently longer – placating King TUT (Time Under Tension) the boring, inconvenient way.
For the time being, I've given up on anything more ambitious than a few door frame squats most days, using a thumbless grip and quitting before my muscles really feel it, with a goal of trying this several times per day. It has made a small improvement, though not enough to offset other setbacks.
I look forward to hearing more about the good news Paul and I’m glad you are updating here still when you can. PainScience has helped me so much with dealing with, as best as I can, my own chronic pain issues. The only disadvantage being I know how many medical “professionals” often know so little and not enough to help sometimes. But I’d rather that than false hope.