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.
I’m reincorporating posts made by a variety of no-longer-public-facing selves,
long into the past. They’re reposted on this blog under their original dates,
with an index in this post. Sorry in advance if these flood your RSS reader!
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.
I guess I’m taking a slightly more laid-back approach to goals this year.
Health issues have unfortunately progressed; whatever pain relief I
was getting from the duloxetine (or otherwise), either that effect has worn
off or the pain levels have risen to break through.
I’ve also encountered a new arrhythmia, so “sudden cardiac death” is back on the
menu of dread. Holter monitor next week where I’ll try to reproduce that without
dying. Rheumatologist follow-up appointment where I expect to be diagnosed with
hEDS in … 12 weeks. So it goes.
Goals, then.
Keep up Duolingo.
866 days now; the streak isn’t the important thing, but it has been a really
good lesson in proving to myself I can stay consistent with things given
the right motivation. (In this case, being able to speak my partner’s native
language.)
Duolingo isn’t for everyone, and the course quality varies wildly, but the
Spanish course for English speakers is incredible, and if you spend 15-20
minutes a day on it, and let it be your fallback activity when bored, you will
steadily but surely gain an extremely real facility with the language.
(This much time is also enough to reliably sit around Obsidian/Diamond league,
and sometimes it can be a nice dopamine hit to make an effort to finish at #1.)
I have the benefit of being around a native speaker all the time, but the first
year or so my level wasn’t anywhere near being able to use it casually without
it getting annoying for both of us. By now, we can switch in and out pretty
comfortably around the topics I’ve covered lexicon for.
I’ve also added Portuguese on the side, spending roughly half my time each day
on each, and it works pretty well! I wouldn’t start two at once (especially
closely related languages like these; too confusing), but being a few years in
with one makes it an easy way to bootstrap another habit. Português é estranho,
mas eu gosto :) It’s a much shorter and less developed course than the Spanish
one, so I expect I’ll finish it this year and start another in its stead.
Daily meditation.
Planning to slot this in with my Duolingo practice. I’ve been an on-and-off
meditator for 20 years or so now. I need the equanimity now more than ever.
Home-cooked meals.
This has been a real struggle over the last year or two, with energy levels so
low (and no microwave in the Tallinn apartment!), but since moving into my new
place back in Melbourne it’s been a key focus. Just need to keep it up.
Deliver the Ava MVP.
Charlotte’s been working non-stop on Ava BASIC (previously) since
July, and hopefully we can get that into a complete MVP this year.
Secondary project.
Having an “off” project would be nice. This is a vaguer goal, but I get the
feeling technical writing would be a good fit for us.
Keep learning.
So far I have an unsorted list of things I’d like to learn or improve at:
Formal methods in digital design. We’ve played around with this a bit (e.g. with
Robert Baruch’s Amaranth exercises; solving Sudoku with
HDL and formal was a cool and unexpected twist), but not enough to usefully use it
in actual designs.
Training on the Africa Twin; I’ve been rebuilding confidence since a fall
after a tyre replacement early last year, but I’d like some controlled
conditions to push the envelope a bit.
Charlotte continues to write there (though about more topics now, including Nix
and Git/jj), and I’m considering her readership bootstrapped after a year of
crossposts. Her Atom feed is linked.
