Purpleyin's slightly fannish tumblr

Oh look at me, actually tagging and putting things in my queue again. Thank you, steroids. This week I actually feel semi-human for the first time in ages.

I thought about writing again recently too, both working on my wip fanfics and me making a whole load of notes about an original novel last night at 3am when I couldn't sleep.

Only downside to this bit of up is not knowing if/how long this will last once the short course is over and whether things might simply go back to just as bad as they have been for a while. Also the fact the rest of my life still feels like it's slowly imploding, but that's a topic for another time, if ever.

Not been good at updating on personal stuff lately I know, for anyone who is interested. Health stuff is marginally better? I'm less wheezy now but it still happens (with tingly lips too) if I eat too much high histamine stuff and still no confirmed reason why (but MCAS is still my strong suspicion). I'm more worried that without that obvious reaction in some cases maybe I'm still interacting with things that trigger me in less obvious ways? No luck with NHS helping there. Still waiting on allergy tests due to paperwork bureaucracy. Life is still too itchy!

Still waiting on minor surgery too, that I'm due for my toes that's causing both inflammation and thyroid dysfunction relates to that (mildly overactive) - it's been 2 months since referral and no word so I suspect it's gonna have to be I pay £1000 of my own money to fix that. :( They wanted to decrease my thyroid meds despite my not really having any major overactive symptoms, but as always they're eager to decrease my T3 (the one that actually I felt works better) I'm not keen to since they'll probably refuse to put it back up after the inflammation resolves due to being 'normal range'. My solution was to convince them I prefer not to and then adjust myself to see, that way I don't permanently lose the level that was previously okay for me.

Life seems to go by with brief humps of productivity but still very frustrating. Too much laundry. Too much clutter. No able to focus enough to work. Got the new fandom hyperfixation of Grishaverse (minor hyperfixation of Free Rein too). Found some nice new fandom friends there that do multiship and polyam so that's good. I still feel like life is in a strange limbo with COVID though. I don't know how things are gonna get better longterm. I just slog on, you know.

I think one of the reasons I relate so hard to kanej lately is the fact I'm immunosuppressed. I've literally not been able to touch my partner for three years now. I don't love them any less but we can't touch, we can't even inhabit the same physical space indoors without risk to me. To boot, my issues with sunlight mean we can't meet outdoors either for any amount of time. The idea there's still significant feeling and love between people without touch or physicality is pretty meaningful to me. I hope for more, one day, when I'm less ill or COVID is less a risk to me, but I don't know when it will come. I don't know if it will ever come tbh. I guess that's a huge part of why I am so into the ship.

Well, I wanted to do something for the Hartmon winter weekend but I ran out of spoons. Used what I had on events organisation and none left for creative stuff. I had hoped to do a little more today in general, householdwise too, but I think I picked up a cold at the doctor's Friday. A visit which revealed via the bloodtests that I'm probably a bit too immunosuppressed right now (low lymphocyte count). I still love the hartmon idea I came up with (featuring figure skater Hartley for the ice skating prompt) and I might just do it late this week or for next weekend.

Health stuff is slowly getting better (two infections gone away - one left, plus the much antibiotics aftermath, and now a cold) but I can't cope with that much per day yet. My heart rate is still fairly raised most of the time with only occasional getting to more like normal. There's such a big build up of washing and cleaning in the house and I can only do a little of it per day too. But I'm trying to do good at pacing and relaxing and not overly worrying about what I can't do. Mostly I am doing the minimum I can get away with in order to not stress my body. Having cozy duvet and quilt and fluffy blanket to snuggle up in helps.

I'd been wistfully eyeing up Steam Decks lately but noticed I could do Steam link app with my android tablet instead so that was nice to realize I could do for gaming in bed, even if it's more power consuming to run pc and tablet at the same time.

Watched my first Christmas movie of the month this afternoon, "Your Christmas Or Mine?" which I enjoyed. Really enjoyed both Wednesday and the first part of S2 Firefly Lane. Currently thinking of rewatching S1 of Shadow and Bone.

I started listening to The Expanse audiobooks as well, to rest in bed physically more while not being so bored, and I'm appreciating how well they adapted it for TV so far, but it's also interesting to hear the differences too. Looking forward to Drummer turning up and getting an Amos POV eventually.

An update on life: I think I just had the worst week of my life so far. I know other people go through much worse but this was just a level of Too Much after already so much this year and the last few months in particular. Many forks too many. Medical stuff has been bad the last two months and every week I hope it will get easier but so far it's instead got worse each week in some way.

This week topped everything with a) secondary tachycardia from my 2 infections, b) needing a fourth lot of antibiotics for the main/first infection, c) discovering I'm quite allergic to the alternative antibiotic they put me on (I called 111 who called GP, GP telling me to call 999, ambulance and adrenaline shot), d) being told during my airway check that I also have bacterial tonsillitis now meaning 3 concurrent infections, e) getting home finally after being cleared allergywise only to have another rebound reaction after about an hour home that they didn't warn me could happen (this is my first severe allergy), meaning another ambulance call because I had tingly lips, since throat constriction again, plus bizarre shock like reaction (deeply cold to my core, confused and shaking uncontrollably) and f) having another lesser reaction most of the way home in taxi once cleared again the next morning and having to go back to be given a massive steroids dose.

4 or 5 admissions depending on how the last trip back is counted officially. 4 of which were back to back pretty much meaning I was awake 51 hours straight because there's no spare beds and it's impossible to sleep in the waiting room. My back is thoroughly messed up by the horrible chairs there and my desperate attempt to contort myself into a 2 chair lying down at one point but I was too tall to, and strained my leg muscles with that too.

I'm home again and 72 hours have passed since the first exposure so hopefully I'm out of the danger zone for more reactions. Still quite unwell with the infections and having to lie down lots to reduce heart strain. The tonsillitis especially is painful and complicates my trying to tell if there's anything untoward going on in my throat. :/ I really hope I manage to shift at least 1 infection in the coming week, ideally 2 if the tonsillitis can be over by the end of the weekend, or else I may need further help for that.

I really need some good about now. Health stuff has been increasingly bad and overwhelming lately. I thought getting some steroids prescribed on Monday was gonna be the turning point to that because it meant my autoimmune flare - that's been an issue a lot of this year and just kept getting worse and worse - was finally getting treated. But so far instead those caused an infection I gotta take antibiotics for as well and the side effects between those two things are making me feel extra sucky and I'm generally worried about things getting more complicated.

I feel a bit stupid that one of my fav fandoms is Stranger Things and one of my fav characters from another fandom is Cisco Ramon, a show and a character that makes extra special use of flickering lights effects, when I, a migraine sufferer has increasing sensitivity to flickering effects and watch both.

I mean, it wasn't this way when I started liking either, it's something that's gotten worse since that (stupid autoimmune problems getting ever worse) but it's starting to edge on a problem because there's certain parts of the shows I probably shouldn't watch in case it triggers a migraine and I try to look away from now but can't always remember when it will come up. Cisco focused fanvids are tricky too, much as I like them, and of course some of the best scenes in ST s1 for Stoncy, my ST OTP, are the ones with flickering in the background. RIP me.

Tangentially related to this, I really wish insta/twitter fancams didn't randomly make use of lowkey-to-highkey flickering effect for no real reason. It seems to be trend that the vast majority of those use those in some way (is it the software/app people make them with?) but it hardly ever makes the fancam better imo and I really wish it wasn't a trend because there's so many fancams I have to stop watching due to that.

As a board gamer with low income it so often frustrates me how much of the hobby I end up priced out of. I've got a decent enough collection from when my income was better (I used to spend what Christmas bonus I got on new ones - it was a highlight of my year) and occasionally getting lucky at charity shops but I can't afford to buy much at all anymore. I also used to rely on conventions to be able to try new games but no way I'm going to them with COVID still very much a thing because no one masks at those and then they get surprised they caught COVID. :/

It's an unfortunate reality that most board games are limited print runs that don't tend to get another and if you can't afford to get it soon after the printing you might end up never being able to buy it if it becomes a rare item that people mostly like too much to sell used and prices end up jacked up on what's left. There are some amazing games out there that a lot of people will never get to play because so few were printed and so few people have them and they may never meet anyone who has a copy unless you get into board gaming clubs or conventions. The conventions themselves in the UK at least aren't always pricy - some only cost £30 for a weekend ticket for example - but accommodation and food in the vicinity is often expensive and not close to cheaper alternatives. Unlike sci-fi and fan conventions I've never seen any kind of accessibility funds to help people of low-incomes to attend either.

I'm actually really happy that BoardGameArena exists now and keeps growing because it's somewhat free and even if you pay for their premium you get so much from it for a low price per year, less than 1 board game usually costs. I feel like it makes board gaming a lot more accessible for anyone low income. It might not be the same as playing in person, for when that's sensible again, but there are plenty of games I might never have tried if not for them being added there.

I think the move to digitize board games available on several platforms is also good for some longevity and preventing the limited print runs issues. And having the setup done for you on digital versions is a big help when low on spoons too. However, it's only fairly big publishers doing this from what I'd seen. I assume small publisher and indie board games simply won't be able to afford game dev costs and the only way to get round that is to license to a games company who wants your game if it's popular enough or get the game developed by volunteers on BGA instead.