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A lifetime of warning signs
“So it all started in 1974…”
This post probably won’t be viral hit. “So it all started in 1974” is not exactly clickbait; a little ancient personal history won’t be burning up the internet. But that’s what you’re getting, because I’m not going for virality here. This ain’t the TikToks.
I’m just trying to solve a difficult health problem (while a bunch of subscribers watch). And that problem is an old problem.
My goal for Project Try Everything is to explain and explore my best theories about why my health is failing… all the better to test them with. But I can’t really do that without the backstory, because this health crap I’ve been slogging through didn’t really all start in 2015. Alas, although 2015 was certainly the start of a major new phase, it wasn’t how this all started. I just tell people I’ve been sick since 2015 to keep it simple.
The full truth is a lot fuller. Ain’t it always?
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First there was 30 years of weird, erratic shit
2015 was “The Great Worsening” of a problem that had been hassling me since at least as far back as 1985, and even earlier. As bad as 2015 was — and it was very bad indeed — it’s not possible to blame all my problems on anything that happened that year. Much as I’d appreciate that simplification.
So the longer story is at least decades old, but I can summarize it surprisingly easily:
There have been warning signs all my life, even as a toddler, and things actually got ugly and really weird for a while in my teens, a big deal at the time. I missed some school.
Then I seemed to bounce back and things were mostly fine for many years, just with occasional scary relapses. For a few months in 1997, I felt crappy enough for long enough that I thought it was all starting again… but just as I was really getting spooked, it passed like a summer storm, and I went back to feeling fairly healthy and even quite vigorous.
Those were the good times!
Then there were many more warning signs from 2005 to 2015 — a tamer version of what I live with today. At the time, I mostly just seemed too injury prone, though the way I’d get sore was pretty fishy. But I chalked it all up to a bit of bad luck and just being a little biologically quirky. But “winter was coming.”
And then there was The Great Worsening in 2015. Which did not pass like a summer storm. The winter of my health had come, and it has never left.
More detail in timeline format
A timeline is redundant elaboration. I am mindful that I have an audience, but… this project is also for me.
I was born in the early seventies, before we even knew that ulcers were caused by a bacteria. Nothing before I was born relevant unless I want to get into the epigenetics thing, which isn't entirely nuts, because my father was a combat veteran with PTSD, also the survivor of a serious plane accident… but that's a highly speculative tangent if ever there was one.
1971-1973 — Healthy! Normal kiddo. Those were the days! *sigh*
1974 — Welp, something is wrong! Extreme nightmares and night terrors in a toddler? Likely the first symptoms of narcolepsy (often a consequence of infections, and I'd had a couple nasty ones). I have had shitty sleep and vivid nightmares for my entire life since.
1975-1985 — A semi-normal childhood. (I did learn to program in basic on a TRS-80 CoCo, so there’s that. I was always a dork.) One major exception: I had “slow growth syndrome,” and was prescribed human growth hormone for a couple years by a somewhat famous Vancouver doctor. I was suspicious of that for ages. Not so much anymore.
1985-1990 — Drama! And not just the usual teen bullshit. For years, I had serious undiagnosed “illness” that consisted of a lot of malaisey lassitude and rather dramatic episodes of acute exhaustion, borderline seizure-like. So that was rough and weird. I missed a lot of school, did a lot by correspondence.
1990-2005 — I just kinda got much better. It felt like I “grew out of it.” For fifteen years of young adulthood, I was mostly fine again, just the relentless insomnia … and the occasional glitch in the (health) matrix. Once in a while I would have a distinctly weird bout of malaise. Each was a big deal to me at the time, echoes of my shitty experiences as a young one. But in the big picture? Just blips. Memorable, like bad migraines, but they did not really alter the course of my life.
2005-2015 — The most epic episode of insomnia in my life to date — for months I often slept as little as an hour or two per night — followed by signs of premature aging that never ended. Too many injuries, and way too much soreness and weariness after exercise. But I never thought of myself as “sick” or “disabled.”
2015 — The Great Worsening! Which unfolded in three dreadful stages:
Flu-pocalypse. By far the worst infection I have ever had (and for my wife too). Not that severity is actually required for post-viral syndrome, but it’s hard not to see that devastating infection as a major health incident.
Tonsil-pocalypse. A sensory nightmare. I basically felt like I had something stuck in my throat for a year. It is impossible to overstate how much it felt like that almost drove me "insane." Whatever that means.
Benzo-pocalypse. Then the even nastier nightmare of withdrawal from benzodiazepines, one of the truly great nasty human experiences. Only people who have been through it can possibly understand how freaky it is. “If you know, you know. If you don’t know, STFU.”
2016–NOW — Not super okay with being alive anymore. But I have miles to go before I sleep, and life is suffering, so… okay, working the problem.
Are there clues in that history? What’s relevant in that mess?
The events of 2015 may resemble or illuminate the original cause of my troubles, but the logic is inescapable: they cannot be the cause, because my troubles started long before The Great Worsening — which obviously made a bad situation worse.
My teen experiences were qualitatively quite different, but the theme they shared with my modern woes is malaise: feeling weak and off to varying degrees, in episodes and phases. If I squint just a little, they do seem like the same problem, seperated only by aging and maturing, by radically different biological and psychological contexts.
Although the growth hormone episode is a very tempting scapegoat, I have spent some time studying that subject, and have decided it just isn't a likely explanation.
Pain is the closest thing to a whole new class of symptom in my story. But that also predated the Great Worsening.
And then there’s the insomnia.
My oldest problem: sleep
My oldest health problem is undoubtedly the shitty sleep caused by narcolepsy — which is (I repeat), a disease of sleep regulation that makes it hard to stay awake and stay asleep. All narcoleptics are ironic insomniacs.
I was having the pathologically vivid nightmares of narcolepsy by the age of three. If cause must precede effect — and I am pretty sure that it must — then lifelong sleep deprivation from a serious sleep disorder is the only hypothesis I have that precedes all of my other health problems.
And a lifetime of chronic sleep deprivation could be all the explanation I have ever needed for my troubles. That is plausible. And, notably, the worst insomnia episodes I’ve ever had both preceded major worsenings:
In 2005, I went for several months barely able to sleep more than about 4 hours per night, and often only 2 or 3. It felt catastrophic at the time, and it was followed by the ten year "premature aging" phase.
In 2015, I had another particularly disastrous episode of insomnia. It wasn't as bad as 2005, but it did directly precede The Great Worsening.
None of this means that sleep deprivation is my only problem. But it might be.