previous: issue 6.

i added the first mini zine!

i wanted to scan and put up the few mini zines i made so far. since it's a bit of work and i'm low on spoons, it's probably gonna take a while, but the first one is up: high (academic) expectations(& how they messed me up). it's from march 2024, so not completely up to date / doesn't completely reflect my current mind-set and situation, but overall it's still accurate. plus i'm trying to be more accepting of processes, changes and "imperfections", which includes past / "older" art. i did add some "after thought"s to it tho.

my me/cfs consultation application got denied

well. i didn't get in. which sucks, but it was always an option and i guess i understand their reasons? i have a bit of trouble interpreting their letter, but i think it's because:

1. they only take patients if there is a "strong suspicion" that it's me/cfs -> they don't think me/cfs is likely enough
2. they only take patients whose symptoms started with an infection -> it didn't start with an infection so it's not their field of responsibility
3. they have very limited capacities and only take patients who are "severe" enough to warrant their time, resources and attention -> i'm not part of that group

or a mix. or all three. there is no way to know and they explicitly stated that they won't respond to questions, so i can't ask about it either.

it sucks, but i see where they are coming from. whatever i have probably didn't start with an infection and i'm on the mild-to-moderate side of things, so if they have to ration their resources i'm all for helping the people who need it most first. so, while frustrating, i don't blame them and i'm not mad or anything like that. but the possible implication that they don't think me/cfs is likely enough, is what troubles me.

nowhere in their letter do they say that they don't think i have me/cfs, and they even acknowledge that infections aren't the only possible cause but that it can also develop due to traumatic, orthopaedic or psychiatric reasons - it's just not what they concern themselves with. which is kinda sad, because they are pretty much the palce to go and experts to consult on me/cfs in germany (there is also a center in munich i think but as far as i know they only treat children, teens and young adults up to 21), so where are non-postinfectious patients supposed to go? seems like a gap, but that shouldn't be surprising.

they also say that fatigue can be a symptom of many diseases / disorders and that with some of them it's nearly impossible to differentiate between them and me/cfs. which makes sense, but i thought that's why they asked for tests beforehand? maybe that's why this part kinda sits wrong with me - it feels targeted in a way (but i admit i'm a bit "cautious"/"sensitive" when it comes to that because doctors love to blame my depression for everything). then again, they didn't even address me correctly, so it could just be a copy-paste-response.

the whole thing is invalidating and disorienting. i don't quite know what to do now. like, i'll ask my doctor(s) about it but i don't expect them to provide solutions or have ideas for possible next steps. i always had to initiate and organize everything, so i doubt that anything will happen if i don't have a clear plan. and i'm currently out of plans.

it's probably going to be fine. all the most important medical things so far - hrt, top surgery, autism, adhd - took at least two attempts, way more time and energy than anticipated and i had weird hurdles thrown at me, but i still managed. somehow. it would've been nice to have one thing be a bit easier (if you call the application process "easy"), but i guess i should be used to this by now.

so i'll be frustrated, demotivated and anxious for a bit, then i'll try a different way. but i'm not there yet. it'll probably take a few days.

hello from the hallowoods

i was listening to "the department of variance of somewhere, ohio" (good podcast too, btw) and william a. wellman (creator and narrator of hello from the hallowoods) voices a character there, which reminded me how much i love their voice. so i went and started relistening to their podcast, for the n-th time, and it still hits really hard.

it's about an expanding, interconnected cast of characters living in a world that has changed catastrophically - it's brutal, heartbreaking, comforting and beautiful. if you like fiction podcasts, i highly recommend hello from the hallowoods.

an alexithymia analogy

i was texting a friend, trying to explain how alexithymia feels for me, and i came up with an analogy (or is it a comparison?) i'm rather proud of, so i wanted to put it here too.

i'm using "emotions or feeling" or similair formulations because i have no clue what the difference between the two are. i didn't even know there is supposed to be a difference - i thought they were just synonyms! i've tried looking it up, but it's all very confusing and i don't have the capacities to properly look into it.

as a bit of a sidenote, i've really come to like using comparisons and/or analogies. i often have difficulties interpreting analogies, comparisons & co. made by other people, but i understand the ones i make and i think i've gotten better at making them understandable for other people too. so while it's still not the best idea to use them if you want to explain something to me, it's a good way for me to explain something to you. most of the time. i'm still working on making them shorter.

obligatory disclaimer: i am only talking about myself. alexithymia is a spectrum and everyone's experiences are different. this is not a generalization.

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let's say i'm in a room and there is a security camera filming me. it sees the entire room, but nothing outside it. the camera is kinda shit: it doesn't capture audio, the visual feed is grainy, there is static, interference and sometimes just empty frames. for day to day use it's good enough tho. what's also important in this context, is that i don't know a lot about music (i can vaguely distinguish maybe 4 genres, but my main categories are loudness, speed and whether i like it or not) and i'm wearing hearing protection practically 24/7.

someone opens the door to my room open and runs in without being invited and without warning. they place a loudspeaker that is playing music on the floor and then run off again, without saying a word. so now i'm in this room, alone, with a loudspeaker i can't turn off and no idea where it came from. i have no control over the music that is playing or how loud it is. it could be quiet lo-fi, the soundtrack from an action movie, or wall-shattering techno. if you'd ask me in that moment what music is playing and i noticed the music, am able to hear, understand and answer you (none of which is a given), i could probably provide a vague discription or opinion of the music. after some time (can be seconds, minutes or hours) the person comes back, takes the loudspeaker and leaves, closing the door behind them. i can no longer hear the music, nor do i know where it went. to me, it's just gone, as quickly as it arrived.

that's what having an emotion or feeling feels like to me. if their intensity is under a certain threshold, i don't notice it at all. if they are intense enough, they hit me without warning, all at once. it's stressful, overwhelming and disorienting, but often short-lived (which is good and bad. good because i'm not stressed as long, bad because i have no chance to process what is happening). emotions feel like they just happen to me, instead of something i have any part in.

trying to remember my emotions or feelings is like watching the security cam footage. if the person carrying the loudspeaker is sneeky or quick enough, i ("watcher-me") might not even see the loudspeaker, let alone think that there could be music playing. but even when i see the loudspeaker, there is no sound with that visual. to me it's quiet. sometimes i can try to make educated guesses based on how film-me is reacting. is it trying to bury the loudspeaker underneath pillows or hiding in a corner? probably really bad music. is it just carrying along like before? maybe the music is too quiet to notice or simply unobtrusive. is film-me swaying along or even dancing? probably good music.

but all that can be really hard to see through the static, glitches and blank-spots of the recording. and even then, i'm still just observing. i don't hear the music, i don't feel the emotions / feelings.

---

to be honest, i don't know if this latter part (not being able to remember emotions) is connected to / because of my alexithymia. to me personally it would make sense on an intuitive level that they are connected, because how can i remember something that i didn't even really experience? i know, i did technically experience them, but it doesn't feel like it, which is also be because i don't remember experiencing them, so this might be circular.

it could also be because of aphantasia, dissociation and/or trauma. in addition, "severely deficient autobiographical memory" (sdam) is a thing, which i've never heard of before this, but sounds like it describes this phenomenon but you're born with it (if i understand it correctly). i don't know if that's the case for me? kinda hard to tell when you don't remember shit. anyways. i really like the term emotional amnesia, but i'm not sure how widely known or used it is.

writer's block or something?

i'm having quite a lot of brainfog at the moment and writing is hard. both here and in my notebook. i don't like it? i think writing is how i process things. noting them down in whatever form or medium makes them more real in a way. and they last longer, because i forget a lot and even if i don't my memories and thoughts feel very detached and foreign. like, if i read back what i wrote last month, last week or even yesterday, it just seems strange. idk if that makes sense.

anyways. producing words and putting them down is more difficult than usual and it sucks because i know there is stuff i should (and want to!) write about and i know i'll forget them if i don't and yet i still can't. maybe i'm more stressed and/or fatigued than i'm aware of.

the murderbot diaries audiobooks are amazing

the books / novellas have been on my (extremely long) "want to read"-list for a while, but i've partially accepted that i'm apparently not reading a lot right now, so i procured the audiobooks and it's really fun.

i love murderbot. for some mysterious reason (/s) robot-ish characters are some of the most relatable characters and murderbot is no exception. quite the opposite: agender, asexual, aromantic, autistic and it/its pronouns - murderbot is probably one of the most relatable characters i've come across! but also apart from that it's an interesting, entertaining character and its point of view is what makes the story so enjoyable.

definitely recommend. i'm having a lot of fun!

new list about small accommodations

i made another list! well, i'm still in the process of making it but there is already some stuff in there. it's about tips, tricks and smaller measures i use to make my life easier. i'm disabled (yes, i've finally come around to using that word for me), obviously that influences every day and i have gotten better at planning for and dealing with that. maybe some of my ideas can be helpful to others and even if not, it's also good for me to have that overview.

i tend to underestimate, invalidate and/or downplay how much i'm affected by my disabilities, so having a collection of adaptations and changes could be an useful reality check. maybe that sounds dramatic, i don't know, and i do feel the need to clarify that i'm still relatively "functional" (whatever that means), but i'm still not neurotypical, non-disabled and able-bodied.

sidenote: i also figured out how to make footnotes!

next: issue 8.