previous: issue 7.

bullet point updates

when in doubt (or when brain has trouble formulating things), make bullet points.

• how the hell is it already september?
• i got accepted at my new university! library and information science (two thirds of the degree) + media science (one third of the degree).
  • i am relieved everything worked out so far and i think i'm excited and happy about it, but it doesn't feel real yet. "big things" are often hard for me to process and to have (recognizable) emotions about. hopefully that'll come with time?
  • mostly i'm nervous and scared tho (those emotions unfortunately come more easily). i haven't been a "full time" university student for years and even only taking a few courses overwhelmed me the last time i tried, so the thought of trying more is scary. last time i overestimated my capacities and overdid it was working a 50% instead of my ususal 25% job in the beginning of this year (january to june), and i'm still recovering from that i think.
• some of the fingers on my left hand seem to be going numb again. fascinating. [add-on from a few days later: it seems to spread. now it's all of the fingers on my left hand. they are not completely numb, but have definitely lost sensation. i don't think it's particularly serious.]
• i have an appointment with a new doctor next week. i found their name on an me/cfs forum list of german doctors who are (supposedly) at least aware of me/cfs and might be able to help me out.
  • sidenote: it is kinda sad that "heard about me/cfs at least once" ("Hat von ME/CFS schon einmal gehört") is a critera in that list. obviously i'm glad the list and those doctors exist, but it seems emblematic of how much there is still to be done.

some minor changes to the front page: i made a list for all my ideas, ongoing tasks, projects, and so on and linked it there, so it's no longer directly on the front page. instead there is a "status report" with some information on what i'm currently doing. i wanted to make it a bit more personal and give people the chance to get some info at a glance, so that they don't have to read the latest / current issue.

official diagnosis? and new medication? i guess?

so, well, i had a doctor appointment today (see above) and it went well. confusingly well. i sent all my documents in advance, the doctor actually read them, asked useful questions and listened to me. which is what i hoped for, but somehow i still didn't expect that.

based on my previous tests, symptoms, diagnostic criteria, etc. he says i have me/cfs and probably pots. i am scheduled for a standing test and i got a prescription for ivabradine.

i'm somewhat overwhelmed. this should be a relief, right? it was what i was suspecting and trying to get assessed for, after all. but it feels more complicated, idk. can't really describe it - it's just this vague sense of unease.

imposter syndrome

i'm having worries about the diagnosis. like, i don't think they are wrong, but my trust in doctors and myself has been thoroughly eroded, so idk what or who to believe. i cognintively know that i would have this feeling no matter who diagnoses me or how difficult the process was and that no amount of evidence will be enough for my brain.

i think i'm scared that everyone else thinks so too.

quiet

idk, it's relatively quiet here at the moment. i don't know if that's because there is not much going on, or if i just forget. here are some small things i remember:

• new medication (ivabradine) is great so far. i can walk more places and shower standing up again, which is very nice.
• looking into the process of applying for a "GdB" ("Grad der Behinderung" - measurement of disability) and the amount of (paper)work is discouraging.
• i started carving some small stamps.
• kinda focused on notebooks again. had a week-long quest to find the perfect notebook for university (because i'm nervous about the starting semester so i try to plan as much and as well as possible in the vain hope that'll make the whole thing less uncertain and unsettling). also spent some time setting up my new pocket notebook because the current one is about to be full.
• having the usual hair troubles. kinda want a haircut, but i also like having a small ponytail. --> solved that by just cutting my own hair. for some reason that felt like less of a commitment than going to a barber. turned out ok i think?
• read the book "the library at hellebore" by cassandra khaw and it was really fun! it's been a while since i read a book in a single sitting. not because of the quality of books (i have many awesome books on my pile), but because of adhd, fatigue and brainfog. so this was great :)
• started reading "you weren't meant to be human" by andrew joseph white and holy shit. it's really good, as i thought it would be! i really like the author's other books and this is his first non-young-adult one, so i expected the ramp up in horror, but i guess i still wasn't prepared. so far it hits really hard and i sure have a lot of emotions about it. highly recommend, but maybe check the content notes.
• because i tend to get very overwhelmed when confronted with too much computer stuff, i thought it would be a good idea to already start working through the programming course. and while still intimidating, i reached the point where i no longer feel the urge to throw my laptop out of the window! yay!

there really wasn't a lot in here this month. which is ok. with university starting next month, it could either become even less (busy-ness and stress) or a lot more (distraction and procrastination).

next: issue 9.