Some months back, I stopped being able to sleep (or comfortably lie at all) on my left side. Like most of the slowly encroaching issues of my body since getting COVID, something circulation-related happened, this time in my shoulder, and lying on it causes my heart to beat hard and it’s impossible to sleep, or feel like it’s a good idea remaining in that position at all. I keep trying it, just in case, and it doesn’t get better. This is the same shoulder that gave me a whole lot of pain last year, so, I dunno, guess it’s related.

This was disquieting but practically speaking not a huge deal; I’m a side sleeper but don’t prefer sleeping on my left side anyway, and I still had lying on my back to switch between.

A week ago, though, the same problem started on my right side. Like I don’t have enough trouble sleeping.

Unless you pay for it, or it’s specifically designed to dehumanise you, you won’t get a diagnosis. There’ll just be something kinda wrong with you, but not in a legitimate way or anything. You’re probably imagining it. Have you tried yoga?

(This is written from the Australian perspective, where paying for general healthcare is not the norm, and likewise getting some company you pay to cover the more ridiculous bill of some other company that renders a health service is not contingent on perhaps some third party blessing you with a diagnosis that renders you eligible to claim such payments. I don’t know if that’s how it goes in the US but I imagine it may.)

To wit, here’s the list of diagnoses I actually have:

• Autism. The assessment cost me around A$1000 (A$175 rebated) ca. 2022.
• ADHD. Likewise the assessment was around A$1200 (A$255 rebated) ca. 2022; another A$900 (A$455 rebated) to get medication permits renewed in 2025.
• Borderline personality disorder. This one cost me nothing apart from my usual psychiatrist session fees, and was covertly assigned! (You can read more about how that happens but woaaah pardner, read the notas de contenido first.)

Now, contrast this with the (already outdated!) list of medications I’ve ever been on. I guess I have had depression for decades of my life at a time. Anxiety of various forms, too; symptoms matching panic disorder for a year or so. Long COVID. Chronic insomnia. Heavy and persistent dissociative issues, though perhaps they fold into BPD. Likewise recurrent hypomania; or is it cyclothymia? PTSD; or is it cPTSD? I’ve met the “new clinical fibromyalgia diagnostic criteria” for about a year and a half by now, although as a diagnosis of exclusion (“3. You do not have a disorder that would otherwise explain the pain”), it’s funny because perhaps there are other, mutually exclusive diagnoses of exclusion that would match; namely hEDS, which I’m one or two (perhaps undiscovered!) signs off meeting.

But y’know, unless I go to a specialist and pay them specifically to assess me for something, it won’t happen. (Unless, per the opening paragraph, there’s something of you that needs to be stripped away. For society’s safety! And the life insurance companies’.) And this can be annoying: I would really like some answers, or hell — speaking now of chronic pain — a better legitimised excuse for feeling as awful as I do every day. Every time someone newly learns of how I’m doing: “oh but you look good!” “I hope you’re on the mend at least.” MY FRIEND I JUST TOLD YOU I HAVE HAD STEADILY WORSENING WIDESPREAD UNTREATABLE PAIN FOR TWO YEARS NOW DESPITE SEEING THIRTY DOCTORS A YEAR IN THAT TIME. WHAT DO YOU THINK.

The other thing I’d be remiss to omit is that health conditions and diagnoses are (by and large) not real¹. There is nothing so locable as “depression” in the brain/body/wherever you think things are. “Generalised anxiety disorder” and “social anxiety disorder” and “other specified anxiety disorder” aren’t, if the last one didn’t give it away, reified, separable, and specific conditions. Diagnostic criteria are for diagnoses, and diagnoses are for guiding treatment at the population level. At the individual level, you could have all the problems in the world and not one set of criteria may fit; or many may fit, and every one of those may indicate the wrong solution for you specifically.

1. otoh there are plenty that are, but those definitionally tend to have extremely specific indicators and correspondingly specific remedies (or wants thereof). ↩

Was looking through old emails for some receipts (the literal kind, not the Twitter kind), and stumbled upon this beauty of an opener:

Date: 2016-12-19.

Have been nursing some chest heaviness, palpitations and shooting pains for 10 days now. These symptoms on their own aren’t particularly uncommon, but a week ago some incredible neck and shoulder pain started to flare up on top of it — and get worse, and worse, and worse; like, all day soreness, pretty much trying to knead my left shoulder (in particular) into not-wanting-to-have-it-surgically-removed.

I have been to the ER for a self-suspected blood clot/heart attack/whatever before, and didn’t particularly want to repeat the exercise. Maybe it was just a chest infection with extra steps? After umming and ahhhing about it for a couple days, worsening, I finally book a GP respiratory appointment. Yesterday afternoon the appointment time arrives.

I have to “I know what it sounds like” to the GP a few times, explain my elevated heart-rate on arrival is probably just POTS (since I was sitting in the car waiting for the all clear to come in, not in the waiting room), explain the pain in my legs is probably just the chronic pain I always have in my legs, and after listening to my lungs (all clear) he directs me straight to the ER. I am thankful to my and Annie’s MSA 900s, and it who told me about them.

Chest XR, RAT, ECG, bloods to check for clot or heart damage — nothing. Everything looks fantastic. Maybe it’s pleurisy. Go home, rest, eat lots of vegetables.

So this is where we’re at!

Entire body aching. Shoulders, elbows (both strong), wrists, fingers joints, back of hand (right esp), knees, upper and lower legs top, back; feet all over. I will run this body into the ground if I have to, not out of malice, but out of love for my own existence, our own, its own existence and refusing to let this sap my quality of life. It is clearly not responsive to either rest and taking it easy, or staying moving and stretching and being active. It is caused by neither, helped by neither. I will rest as much as I like, but then I will work and push as hard as I want. Stimulants and cannabis help me do both, and it will rely on them to help with both. To do otherwise is to waste the gift of opportunity it has.

It is on a mission.