pain is the body’s way of signalling danger

you are always in danger

it is so simultaneously disembodying and hyperembodying to be in pain

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.

I go through about three of these a week. Right now I’m telling myself that I’ve done everything I possibly can to get it recognised/understood/diagnosed, and that so far all anyone can say is “idk, fibro maybe?” means there is nothing more to be gained by worrying about it or trying to understand it, no more to be gained by reacting to today’s new form of it, or tomorrow’s, and that the only meaning I really can make of this is that I am to be someone who deals with this, to demonstrate what it means to live in acceptance and all that.

(daily meditation this year has been pretty life-saving, incidentally.)

And then if something does go wrong, well, that sucks, but doesn’t make this choice any less correct with the information I have now.

Rheumatologist was distracted and not really listening. He had nothing new to offer at first, but after it was clear I wasn’t game for “what if we try more anti-inflammatories” round III, he suggested a ketamine infusion to try to reset my nerves. I don’t like the idea of a hospital stay but, y’know what? Fuck it, we ball. Consult with the anaesthetologist in four weeks. If nothing else I get to eat hot chip.

Qué sorpresa, the tricyclic’s side-effects ended up prohibitive even on minimum dose; seven weeks was the mark for “increase again and start reducing duloxetine, or abort”, and I have chosen abort. No end in sight for night sweating. Getting a hold of my psychiatrist again to see what his bag of tricks might hold.

Time skips along. I am unsure how I feel about the impressions I leave on this world; unsure about most things. The rise of LLMs at this particular juncture has been really depressing; I am starting to lose my patience to deal with their insertion in my life in any context. The next time someone at work suggests running something through ChatGPT I might just take the rest of the day/week/month off. A good chunk of my industry has fallen for the bait. I was already having trouble taking other people seriously, in general, as a concept. Now I have to deal with them coming off as less interesting than the automata they coo over. Please, tell me about your productivity gains. Tell me about the vibes. Tell me. I am listening.

There are a few things I am able to feel sure about, one of which is this: trans rights are human rights. I don’t run any analytics and don’t often think about my reach, but I have some, don’t I?

May we find the liberation, friendship, and family we deserve. May we become ourselves, unfettered by shame. May our arrows find their mark.

Those who oppose our right to peace, self-determination, and a life worth living, entirely on our own terms – may you eat shit and die.

I was sitting in the dark the other night, meditating; at this point in time, there was a particular point on the inner side of my right ankle that was particularly hurting, and my focus there; a little duller was an ache on the top of my left foot. In being with it, I realised, oh, this is chronic pain.

And it’s not a very surprising thought now, truly, but when you go to bed one night and your leg hurts so much you’re worried there might be a blood clot, it’s not yet obvious to you that this will be the start of something that will last at least nine months more. But I think nine months without a cause identified is probably a fine enough time to say we’ve crossed the line into “chronic pain”.

In the presence of daily pain that seems to change form and “spread” through the body, it’s very hard to shake the feeling there isn’t something progressive happening. My left eye is seemingly permanently some degree of bloodshot these days. The bruising on my lower legs is ridiculous, and the way they refuse to heal. I’d kind of prefer it if the pain coincided with them, but it mostly does not.

TCAs were indeed my GP’s preference, so I’ve started out a very slow transition to amitriptyline. The relief with sleep has been immediate, an absolute god-send. Was extremely sleepy in general the first week or so and napping every day, but that’s a really nice experience after such a long time of sleeplessness. That’s calmed down since, and while I’m still sweat-waking I’m pretty much right back to sleep and actually feeling rested in mornings. I am noticeably more dissociated on it; maybe it’s just the SNRI/TCA mix, maybe it’s maybelline. Will adjust the dosage in three weeks.

Rheumatologist follow-up finally in just under two weeks (last was 5 months ago); I don’t expect anything useful to come from it. Called it quits with my psych. Poco a poco.

I keep trying really hard to improve my situation, but reality proves a harsh mistress. The other day my wife said “it feels like our circle is getting smaller”, and that’s something of a vibe.

Health issues steadily worsen. Last month I was meant to try triggering the arrhythmia with a Holter monitor, but my sleep started failing so much that I couldn’t have put in the exertion required even if I wanted to. Around the same time, my usual nightly cannabis started reliably provoking palpitations, so I stopped it.

Since then my ability to sleep has completely left the building. Coming off nifedipine helped a little bit with inititation — without cannabis, falling asleep was impossible because of how much it fucked with my blood pressure/head — but maintenance is still impossible. Duloxetine wakes me up every hour or two in sweat without fail. Pain levels have steadily grown.

I started lactating last month (!), which was cool, though I’ve also had a night each month of really bad cramping since then too. Completely immobile from 8pm to 4am last night, but without even the slightest chance of falling asleep or dozing through parts of it; best I could do was rotate on the bed to try to shift the sensation. Now it’s 10pm and I’ve woken from a five hour ‘nap’ and ugh.

Dissociative symptoms have grown much worse since stopping regular cannabis use, which was unexpected. I have a little note I add to when I notice psychosis warning signs, which has been slowly growing, because I don’t know how else one tracks this.

• “feel like i’m a passenger in this body”
• feelings of thought insertion from kin
• “this life simulation is starting to get real weird lately” (re: stuff on kitchen counter/unreality of it)
• “I just can’t get a grasp on anything”
• ‘negative’ sx days esp. sleepless; anhedonia

With continuous sleep deprivation being a trigger, it’s starting to get to a point where I either fix that or fix this.

It’s really unclear how I fix sleep. Coming off duloxetine without a replacement is not an option, but another SNRI isn’t likely to be better (I remember night sweats on desvenlafaxine), a plain SSRI isn’t likely to be good enough (last time I was on escitalopram it wasn’t better than nothing), and while I don’t have experience with other classes to know, it seems likely TCAs will share this property. That said, they’d be new to me and therefore worth a shot.

I could also try to force the issue by forcing sleep itself; temazepam is pretty much a definite no given its long-term viability, trazodone is a maybe, and z-drugs are what I’d like to angle for since they seem to fit the bill best.

“angle for” because getting a psychiatrist within six months of asking for one is pretty much impossible, as measured by kin who still hasn’t managed to succeed in even getting a referral accepted — there isn’t any expert help available, so, as usual, the best I can do is make my case to my GP, who is helpful, resourceful, and has always done what she can.

Fixing psychosis-adjacent issues is the other option. I’d probably be willing to try quetiapine again, despite my last experience. Brexpiprazole might be OK again too (also lol (also “our percentage of participants who identified as non-female (i.e. as male or neither male nor female) was slightly larger (37%) than those in other studies (approximately 25%)”, both figures incredible, BPD enbies represent!)). I list only these two I’ve had experience with as, again, it’s on me to make the case for prescribing. Streamlined authority 4246 schizophrenia, woo.

Seeing the doctor tomorrow (after a bit more than a 3 week wait, but hey at least it’s not months), so we’ll see.

In other news, my last psychologist appointment went awfully — after eight years with him, it’s probably time to call it quits. Surprised the hell out of me by spending our entire hour on his fears and prejudices. I just kind of dissociatively fawned through the whole thing and spent the next few hours in shock until I slowly realised what had happened.

To be clear, eight years before hitting a wall you really need help scaling is a very good run, but this particular wall I’ve come up against repeatedly in the last ~year and a half, this time most assuredly and directly, so.

Still really enjoying Spanish and Portuguese. Daily meditation has been a bit of an oasis. Home-cooked meals have suffered greatly as my sleep has. Char decided to call it quits on Ava; once the editor (and its helper editor tool) was ‘done’, she started back on some language features, but the more we did, the more we realised we don’t particularly actually want to write this language as a “fun thing to do”, and so the impetus for implementing all its gory details went out the window. We’ve been doing a bunch of CAD lately, though, since we got a 3D printer, and that has been fun :) Likewise riding again with our kin.

Finding the good where we can. Boa noite 🧡

content note: physical illness, death, suicide.

one thing about spending enough time fearing death, for whatever reason and reasons that may be, is that one end to it is not removing the originator of that fear — which depending on your psyche or conditions may not always be possible — but learning to not fear death instead.

i basically think anyone who spends enough time in panic over enough years is liable to end up this way. the alternatives are burning to a husk, loss of reality checking, or suicide.

personally still a bit afraid — not so indifferent that i’d go hard for no reason when exercising yesterday, for instance, i give my body what it asks for (fluid movements, light effort, nothing anaerobic), but not so afraid that i won’t do my best to purposefully trigger the new arrhythmia when doing the holter monitor next week, despite risk inherent in inducing one.

i find i keep having to say to myself, if this is all it would take to kill me, then now or in two weeks accidentally say, it really makes no odds. that i have to deploy this regularly to move forward with my days evinces a certain something. and while the uncertainty itself is one degree of unbearable, a kind of assertion that i cannot trust in my self-knowledge, the collective absence of faith from others is another.

if the condition finally gets worse after decades, if everyone’s been telling you it’s false/“Just Anxiety”/psychosomatic/“functional” (given decades of panic disorder etc.), and now it’s enough to be visible, it’s a relief and starts to feel your only ally — the only true thing in all this time. i don’t know if it’s true that the same death i feared and felt daily in my mid-teens until my early 20s is this one, the one now manifesting so physically, or the one that stole a few years away from me from 2016, but on reflection i’ve spent most of the last 22 years actively fearing and feeling death.

an end to this uncertainty and the loneliness within it is not exactly an unwelcome thing in and of itself. we were never promised even one day of the beauty of life, y’know? and i have experienced so much of it, awe-inspiring and terrible and banal. nothing was ever ever promised.

Content note: pain, bad mental health, health issues.

Six months later, we’re back. It’s sad — we were acclimating well, met our neighbours, started riding all over the country, and then I started to be in pain.

Any kind of pain is bad, but the body part(s) affected really define the flavour of the impact it has, I guess, and this has been the first time I’ve had really significant leg pain. That’s sort of underselling it; it’s sometimes in my knees, usually ankles, feet, and though it seems like it shouldn’t be related, also in my elbows, fingertips, and even the sides of my neck, and it all feels very much related.

Still, for the most part it’s in my lower legs, and it. is. constant. I went back on nifedipine, since a Raynaud’s “diagnosis” last year had me try that and it sort of helped during winter. My hands and feet are always really cold, and they were worse than usual, so I was hopeful it’d help. Estonia only had the “medium acting” variant, and it felt a lot bumpier than the modified-release ones in Australia.

After that didn’t help at all, it was time to see the doctor. And see the doctor I did. And again, and again. And a physiotherapist. And an orthopaedist. Two X-rays, two different kinds of strong anti-inflammatory, three weeks of gabapentin, a month and a half of physio, and three months later in total and not even the slightest improvement. Exercising didn’t help, resting didn’t help. Ruled out referred back pain, inflammation, neuropathy, muscular.

Meanwhile, the time between appointments started to stretch out, I guess as folks returned from summer holidays, and I was just miserable. I hadn’t been able to do much of anything in a long time, and the healthcare system in Estonia was really making it hard. The pain on some days made me want to beat whichever leg was hurting into a pulp, because that somehow was more tractable and bearable.

So we’re back. I’ve had some relief since, in being able to switch back to the modified-release nifedipine, as well as get back on an antidepressant — duloxetine, both for the general sense of despair I’ve been accumulating this last quarter of a year (!), and for its help with ?fibromyalgia. The pain is a little bit more distant, but it’s still there and still getting worse.

Finally getting some blood tests confirmed it’s not something easy (anaemia, B12 deficiency) or obvious (cancer, RF+ RA). My money is on COVID-related vasculopathy, but I guess it’s not so easy to confirm, deny, or help. With some amazing luck, I managed to score an early rheumatologist appointment (someone had just cancelled), which then got bumped forward another week, so that’s now tomorrow.

I can’t particularly have my hopes up — we’re up to 4 months now since this started to intrude on my life. Last time I had a new chronic illness, it took more than a year for it to start subsiding regularly enough that I could start to believe it might abate entirely. (It came back for months at a time, years later.)

And unlike that time, this one isn’t only in my head: my legs and feet are increasingly randomly surfacing bruises that don’t clear up for months at a time. A few days ago while out to therapy, there was a particularly sharp ache across the top of my left foot, and when I got home, I took my shoe off and found that a vein had just turned completely black in a spot right there. There’s a blue patch on the back of my right leg (the one that hurts less on average!) that hasn’t gone away in the whole four months. And as my doctor here said, it’s entirely possible that at the end of all our investigations, I’ll still have this pain to manage, maybe indefinitely.

Which, y’know? That kind of thing just happens in life.