zero space times, styled like a ransom note made out of cutout letters

thoughts and things written into the void

may 2025
issue no. 4

front page | middle part | colophon

previous: issue 3.

on sleep

i finally made an appointment for a sleep laboratory. it's still about two months out, but that's fine - i'm just glad i made/have one.

thing is, i keep forgetting how unusual(?) my sleeping situation is, because it's been like this for quite a while and i adapted my daily life and habits accordingly. also i'm just so fundamentally relieved to be on meds that i'm willing to put up with a lot. there was an interruption to my peace at the end of last year, because one of my medications stopped being available and my doctor and i had to scramble to find an alternative. after a bit of trail and error, we found something that worked ok enough, so that's what i'm still on. it's worse than the previous mix and i still hope i can return to that when/if the supply bottleneck resolves, but until then this will have to do.

it kinda scared me to realize how fragile my system is and how dependant everything is on factors that are completely out of my control - it's a weird kind of dread when you know that you only have three of the "good" pills left and have to ration them. having to decide on which days i should "spent" my limited amount of good sleep wasn't fun.

(obligatory disclaimer: i am aware that this is still very priviledged - at least i have access to medication and them not being available is not lethal.)

outside of extreme circumstances (like after a big surgery), i'm pretty much unable to sleep without medication. i have trouble falling asleep, and if i do i have trouble staying asleep and if i somehow do, the sleep isn't really restful. basically i'm just very bad at every single aspect of sleeping.

before i got meds it was common for me to only sleep 2 hours a night, not sleep for over two days or to just get 10 hours of sleep total, randomly spread out over a week. i would still get the physical sensations of being tired (heavy limbs, stronger visual snow and sight impairments, tremors and general shakiness, feeling cold, etc.) and my mental and physical health was a wreck. i don't remember a lot of specifics and that's probably for the best, but the abstract desperation and helplessness stayed with me.

fun stuff. anyways.

i got reminded of all this because i was trying to make a playlist with songs about insomnia or sleeplessness (i recently spent hours organizinga all my playlists and making themed covers for them) and got slightly frustrated that so many of them were just about love or heartache or similair things. as an aroace(-ish) person with alexithymia and little to no interest in romantic relationships right now, this didn't really resonate with me. which is fine, but i was just looking for some relatable songs.

idk how to title this, i'm just excited

there is little that is as exciting as two special interests or hyperfixations unexpectedly overlapping! in this case the book "compound fracture" by andrew joseph white (one of my favorite authors) and the podcast "behind the bastards" (currently the podcast i'm listening to).

don't really have the energy to go into detail but it's about coal miners, unions, armed resistance, labor history, transgenerational trauma and abuse of power and it's really fascinating to learn about!

here are lots of links: [about the book, author's website] [behind the bastard episode one, youtube] [behind the bastard episode two, youtube] [west virginia coal wars, wikipedia] [coal wars, wikipedia] [west virginia mine wars museum] [interview with andrew joseph white and k. a. cobell, youtube] [interview with andrew joseph white, geeksout]

weird additions and restructuring

i recently read the book "hot singles in your area" by jordan shiveley and it was really fun! but what stayed with me the most are the weird, creepy newspaper ad sections - it's kinda hard to describe but trust me, it's really cool. and since this is newspaper i think it migt be fun to take inspirations from that and include some fun illustrations and segments and stuff. i don't think i'll do that in the issues themselves, but in the permanent sections. so yeah, i'll do some restructuring and designing!

(a friend asked me if this website design was inspired by the book in the first place, and it wasn't, but i'm retroactively changing that. so, to my friend: i guess you're a prophet now.)

i also made a new cover-collage-thingy! not sure if i'm happy with it - it's a bit too chaotic and unstructured, but for now it'll do. at least it looks more like a cover now.

birds

there are small birds nesting on my balcony! in the wall on the left side to be exact. i think they are house sparrows (they are small and brown) and the chicks already hatched! i can't see them but i hear them chirping all the time and it's very cute. the parents are constantly flying in and out, so my balcony is quite busy with birds, which is nice.

i like birds - i don't know a lot about them, but i like them. my favorites are probably crows and magpies (all corvids really, but those two specifically), but all birds are good birds.

two pigeons tried nesting on my balcony too, in a spot between the railing and a metal plant holder. the problem was that sound between railing and metal get amplified quite a bit and the pigeons seemed to be fans of that. i wasn't. they were basically broadcasting their horniness through a megaphone. at 5 am. they kept waking me up - i could hear them through a closed door and noise-cancelling headphones - so i stopped their nest-building project. i really hope they found a new spot.

also i really recommend looking up pictures of baby magpies.

complaning about medical stuff

i've been tired since 2017, when i went to the united states for a school year abroad and never recovered from the jetlag. that's how i usually half-jokingly explain my exhaustion. but yeah, i don't remember feeling awake or energized for 7.5 years. which is obviously very biased - i'm sure there were phases where i wasn't and i just don't remember them, plus there are always ups and downs - but overall "tired" has been my state of existence for quite a while.

nothing ever really came of it tho. it wasn't "a big deal" and there was always a more pressing issue that "surely also causes the fatigue". but as my mental health improved, my exhaustion became more noticeable and the chance of it being a by-produt of [insert a diagnosis here] dwindled. i'm now at a point where i'm pretty sure it's something else.

the current hypothesis is me/cfs (myalgic encephalomyelitis/chronic fatigue syndrome). no idea if that ends up being the case, but at least it's something that can be investigated and has a clear road map which (hopefully) end in a distinct yes or no. unfortunately said road map is kinda long.

like, i have to get

just to apply for a consulation. (the first four points are mandatory, the others technically "optional" but my doctor wants to do them and i'm dependant on their support and goodwill.) so, yeah, i'm currently working my way through that list. i've got everything scheduled, but it's gonna take at least 5-6 months until i have all the data i need to apply. who knows, maybe a different explanation will turn up in the process and i don't have to apply after all.

but even if i do, it's not clear if i'll get in. on their website they state, that they only take people 1) who are from the area and 2) if after review there is still a reasonable suspicion about "post infectious me/cfs". i'm lucky enough to live in the area, but it's more questionable whether or not whatever i have is "post infectious". i definitely have been sick a few times in the years since 2017, including covid (twice? maybe?), but i don't remember if this thing started with some sort of sickness.

my feelings about all this are complicated...

i'm thankful i can access all these things, but i'm still frustrated how uncertain and out of my control it is. i'm glad some doctor took me seriously enough to get this underway, even if they still seem sceptical and i feel like they are just "humoring me". i'm so exhausted, but i'm also aware that i'm still quite "functional" and i don't know if it's "bad enough to be clinical". i don't want to have me/cfs, but i'm a bit scared of being left without an explanation (again) or being told i'm "too complicated to say for sure" (again).

we'll see i guess. i'm just trying to get stuff done now, in the hope of starting the next semester with less stuff on my mind and more knowledge about how i work. i want to be done with all this medical and diagnosis stuff.

[at this point i'm just ranting to be honest. content notes for, idk, medical and family gaslighting? maybe some (internalized) abelism?]

i get very frustrated and scared about this kind of stuff. i'm not good at advocating for myself and i still feel very guilty and ashamed for not being able to do certain things. i'm trying to work on that, but it's hard.

my "worth" was always very wrapped up in my academic achievements. my "negative" traits were acceptable because at least they could brag about my grades or scholarships. i was their "smart girl", so when i came out as trans* i was reduced to "smart" and now even that is wobbly (not in the way that my "smartness" changed, but my ability to perform/use it in socially productive and impressive ways decreased and to them, that's the important part). the overall sentiment seems to be that i'm not sick, that i have no right or reason to struggle, that i should stop trying to figure things out and concentrate on something more valuable (meaning career and money).

idk, i guess i'm hoping that if i have a clear diagnosis (whatever it ends up being) it'll finally count. my testimony is not enough, but maybe they'll trust a medical authority? in a fucked up way i don't even blame them - even i tend to trust doctors more than i trust myself. again, it's something i'm working on.

maybe "trust" is the wrong word. my experience with medical professionals has been... mixed(?) to say the least. i have been told i'm "too complicated" or " too diffficult to decipher" so many times. every concern i mentioned was either blamed on my trans*identity, depression or (and that one still upsets me) being "born too early and put in an incubator". so, i don't know if i still trust them. but they (mainly my ex-therapist and family) also managed to errode every trust i had in myself, my interpretations and feelings, so now i don't trust anyone. fun! /s

unsorted thoughts / updates

magnus archives section

i recently made a playlist for a friend with a few selected episodes from the podcast the magnus archives. i am trying to infect them with it but they are pretty resistant so far. not much of a podcast-person i think, but we do share a taste for horror and interesting writing styles, so maybe it's interesting for them nonetheless. (i hope i don't annoy them with my persistence, but they know they can just tell me if it get's too much and i will stop.)

to entice them a bit, i wanted to add context to the episodes, the reasons why i chose them, etc. so i made a page for it. it's still a work in progress and i got distracted making another page for braindumping my thoughts about the series. i also made a special header/title image, experimented with color a bit, etc.

here are the links: [playlist] and [thoughts], but it's also available through the middle part.

next: issue 5.

© vincent z.; style/design based on "noodle soup times" by eggramen