Disabled Community Megathread December 23rd — December 29th
Hi! How are we all holding up? Any wins? Any frustrations? This is the space to discuss them all!
As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:
"Disability" is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.
Mask up, love one another, and stay alive for one more week.
hi hi star here! thank you so much for reposting I finally dragged Mem's years old friend here https://hexbear.net/post/4160129 (points eagerly) >:3 Kir's a fellow disabled trans comrade, lol the unmedicated adhd is very obvious on both of us.. please give him a big warm welcome and check out his art works, as he intends to stay :D
He actually garnered a bit of reputation on COVID conscious twitter for painting masked portraits for folks for $20 each to support Mem! it's a huge discount because time and effort wise it really should be more, but, we are trying our hardest and best to make it however bit easier we can, as we just want Mem to be able to have the barest of necessities to continue to survive :(( so please! gift us with at least your attention! Not even for ourselves! I bow with sincerity.
We are both doing commissions for Mem's bare survival minimums! I will draw almost whatever you want for however much you can pay, Kir's starts at $20! a very flexible price point, eheh... please allow yourself to be enticed, we are passionate drawers and even more passionate friends! We are very very worried as the last donation to Mem was 8 hours ago, and we'd do anything to lessen the labor Mem has to do while already being cyberstalked online!
ty for reading ;; (hand heart!)
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Ivysaur - 12mon
Another week, another eternity of being patronized by leftists for caring about covid still :)
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hexbee [she/her] - 12mon
Will it actually take another pandemic for leftists to just put on a goddamn fucking facemask? Find out in the next episode of hellworld! ಠ︵ಠ
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star_sparkling_soda [they/them, he/him] - 12mon
with leftists like these.... (wince)
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Aradina [They/Them] - 12mon
I brought some masks to my party AGM earlier this month, offering them for both protection from COVID in the enclosed space of the office, and for mitigating the cops facial recognition at the Palestine rally.
One dude who's a nurse took one and informed the others that they probably should wear them in enclosed spaces, but only one other person did and he kept taking it off. (granted, he was leading the meeting and talking the most, and it was mostly to drink water.)
I'm thinking of slowly bringing it up more. Try to get other's to be more covid conscious. I'm planning to use the oncoming birb sickie to push it. Something along the lines of "yeah you're going to need to soon anyway with the way things are going. May as well start now."
Anti-maskers won. It sucks.
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khizuo [ze/zir] - 12mon
Well-meaning advice is so frustrating to deal with. My mom keeps researching my disability online and I honestly want to tell her to stop doing it because she keeps coming up to me with stuff like "I read on xyz that this helped this person cure me/cfs" and every time I need to tell her that this disability is highly variable, that the only consistently proven method of dealing with it effectively is pacing and rest and that just because one thing worked for one person does not mean that it will work for everyone with me/cfs (because if eating a specific food cured me/cfs we would all be doing it already, lol.)
Today she came up to me with a "I read online that weight training is important for people who struggle with fatigue" and now I'm worried that she's actually going to make me do it when again, this is not something that is proven to work consistently. I'm already at my limit of activity and I seriously can't handle adding some kind of weight training regimen on right now. I feel bad for complaining because I know she cares but I just wish she could leave me alone and stop fixating on the idea that I will someday be "cured".
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hexbee [she/her] - 12mon
Yeah it would be fine if she just cared, but she's actually struggling to accept the reality of the situation and then putting the denial back onto you to deal with. It sounds really exhausting on top of everything else that must be so fucking exhausting already...
::: spoiler yapping about my own shit
Reminds me of how my extremely chud parents, after someone in their family was diagnosed with cancer, tried to convince them to not go through with chemo, because "these natural remedies have healed this person in this way in a story I saw online!" It's so exhausting for the person who's actually going through it, especially because my parents were being so insistent on it. Being alone for the holidays sucks, but it actually feels much better than spending it with them tbh
:::
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Ivysaur - 12mon
Also hi I’m back sorta not really maybe I don’t know I can’t stop yapping. The kind words some of you left for me meant a lot. World mostly sucks but not all of it, must remember!
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khizuo [ze/zir] - 12mon
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hexbee [she/her] - 12mon
Reporting for revolutionary yapping duty o7
welcome back! (˘︶˘).。*♡
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Ivysaur - 12mon
I’m late to this response but Steven Universe is so good and amethyst is the best
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hexbee [she/her] - 12mon
Not too late if the thread is still unlocked!
That show forces me to feel good about being trans, which I hear is what you want lol
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AshenWolf [she/her] - 12mon
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gingerbrat [she/her] - 12mon
I've been struggling with my type 1 diabetes for a few years by now (today is ironically my diagnosis anniversary, it's been almost 30 years). Recently, especially the mental toll of the constant monitoring has been driving me nuts. There really is no way out of this one, and even though I never believed there would be, the realization that it is actually not curable has been making my depression worse. I wonder if anyone here has any tips for dealing with this sort of thing. I'd really like to go back to ignoring I have it for 99% of the day.
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Ivysaur - 12mon
I have had t1 for 20 years and I don’t think this is possible unless you are very wealthy and can afford the fancy pumps + monitors they have now. Even then I still don’t really think I prefer it over manual injections and monitoring, but I’m possibly a bit of a freak anyway + Bluetooth tech sucks shit and is unreliable and I DO NOT trust that shit with my life-saving medication lmao. tbh I went through (very unhealthy) phases of “I wish I could ignore this” and it took more than one hospitalization under ketoacidosis to tell me it’s never going to happen. I am not an abled person and you are not an abled person and that is ok. There is nothing wrong with that. I take pride in it now. I’m not going anywhere, at least if I have anything to say about it, so people are going to have to fit around me if they want my company, not the other way around, and I’m not sorry about it anymore. It’s not going away, like you said, and it’s annoying, but that’s the beginning and end of it for me these days. There is not much point in making it harder for ourselves by feeling bad we can’t be like the people who give the least shits about us I reckon.
If this is less a matter of psychology and more practicality…I don’t really have a satisfactory answer. Life gave us a shit hand, but we’re not the only ones. Seeing people like me and you and people amid all other types of disability keep on keeping on regardless (and maybe even happily!) is what empowers me, trite as it sounds. Another thing that keeps me grounded is thinking about animals and pets, creatures of nature with missing limbs and eyes and etcetera. I cant possibly imagine what they’re thinking, but maybe they’re not thinking much about it all beyond “this is how it is, huh, ok.” and they carry on and live. That in its own way is empowering to me, too. If they can do it, so can I.
there IS promising research in China actually for a cure for t1 (genuinely!) and my partner has the article bookmarked but I don’t have it on me (when I find it I’ll links it); if nothing else, maybe keep in mind that things are happening, still!
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gingerbrat [she/her] - 12mon
Thank you so much for your reply! It's good to read something like this from another diabetic. You know how trite and annoying it feels when a doc tells you the same shit but you're like "You don't even know what I'm going through, how are your words supposed to inspire any type of optimism here??" Anyway, I'm glad to hear it from someone who actually experiences the same feeling. Thank you again.
And to put your mind at ease, I really REALLY agree with you on the CGM and pump systems. I don't trust this shit as far as I can throw it, and I unfortunately got talked into one of these newer CGMs, and it's been robbing me of my sleep for over a year. It's frustrating, doesn't give you the right type of info (and when you lie down on the bloody thing, it'll lose contact immediately). I wanna have a good scream about it, and sometimes I just do, so be assured that I am insulting the insufficient and unhelpful tech every day of the week, and now I'll be thinking of you too while I do it. I'll use pens until my last breath, nothing is going to get a pump on my body.
As for the psychological/practical difference... it's hard to distinguish for me, so let me explain: I have never had to go to the ER bc of the diabetes, but that doesn't mean you can't ignore it. You know how easy these things become as routines go, so you just keep going through the motions, but you do stuff like ignoring your body's signals for as long as you can, not taking glucose when you really should, or just eating junk food when you really shouldn't but using insulin to level it out. The older I get, however, the less my body really accepts me neglecting it. It's not like I'm ancient, but it could take glucose levels over 300 as if it was nothing when I was a kid, but now decides to go into vomiting mode. So as these physical symptoms grow stronger, my neglect for it can't go on. Which brings us to the practical part, I am doing everything I can to avoid getting in these tight spots, but it takes up so much time of the day that it sometimes feels like a 24/7 job of monitoring, cursing yourself and/or the diabetes, and then fixing whatever got fucked up in the process. And this is the part that's been weighing on me immensely.
I will try to take your advice to heart, however, and hope that it somehow helps me... to at least tolerate it. I'm not too fond of my body in general (unrelated to the disability), so it's hard to be kind to myself when it's indeed coming from something that I can't exert actual control over. I'm just a captain on a sinking ship without a rudder, trying to get the water buckets filled up so the bloody ship doesn't sink. I'm not moving anywhere, but I haven't drowned yet either.
This was the last thing I read about it but there might have been more updates since then, I’m not sure. Here’s a link to the research paper as well if you want to dig into the details more.
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ashinadash [she/her] - 12mon
::: spoiler discussion of the crimes of chiropractors
It's only finally occuring to me in my mind that: in my teens I had persistent lower back pain and wanted my sternum fixed. No doctor would and still none will operate with regard to either of those, so my mother took me to a fucking chiropractor instead. Presumably her ridiculous workplace subsidised it?
So now I have so much pain throughout my torso in general that it makes the lower back pain almost unnoticeable, and my body is failing as even standing and walking becomes more difficult. It's not very cash money, I'd say.
:::
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star_sparkling_soda [they/them, he/him] - 12mon
:( fuckkkk. so sorry you went through that, comrade.
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ashinadash [she/her] - 12mon
It goes how it goes, I wonder if this counts as child abuse though tbh. Love that they were all fucked up about letting me decide my gender as a teen but were happy to let some unlicensed crackpot fuck up my spine though.
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star_sparkling_soda [they/them, he/him] - 12mon
......in my humble opinion,,,,, I think that is :( why wouldn't it be would be the question. (hug if wanted)
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ashinadash [she/her] - 12mon
It's weird because my parents were "good" in the sense it was never like physical violence type abuse and they seemed ok, but they did all kinds of funny shit anyway I guess...
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khizuo [ze/zir] - 12mon
My OCD has really been going haywire recently, ugh.
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khizuo [ze/zir] - 12mon
::: spoiler depression
I've been incredibly depressed lately but every time I try to type out a post about it I delete it and give up because I think that I shouldn't burden too many other people with that knowledge (not that nobody knows, but still.) Well I guess today is the day when that post finally gets made. I went a few months earlier this year where I wasn't constantly depressed 24/7, they were the best my mental health had been in a long while, and I thought that it was the start of genuine improvement — but now it's back to being bad again, maybe even worse than usual. Maybe I should talk to someone about this, but therapy just never seems to stick for me and I feel bad talking to people about being sad because I know everyone is dealing with a lot. I don't even feel like I have much energy to post on hexbear anymore, lol.
:::
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QueerCommie [she/her, fae/faer] - 12mon
Life tends to suck a lot of the time. I have no advice, just solidarity.
I don’t know what you’re supposed to get out of therapy tbh. I guess it helps privileged people who don’t know how to think for themselves? Metacognition doesn’t do much for misery.
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hexbee [she/her] - 12mon
::: spoiler spoiler
I delete it and give up because I think that I shouldn't burden too many other people with that knowledge
"Burdening" someone with the knowledge of what you're going through isn't anywhere near the same as actually going through it, and I think it's fair to expect solidarity when sharing these kinds of things. Imo the problem is more the normailsation of suffering and how hard-found and hard-fought genuine solidarity is for disabled folks. Edit: or even just all the comrades' capacities being battered to shit by increasing precarity since 2020 tbf
I'm sorry you're doing worse again after a short spell of doing a little better. I find that I struggle to make full use of those better periods, because I'm already expecting it to get worse again, which makes it feel pointless. But I know that's not very revolutionary optimism of me and I'm trying to work on it.
In terms of therappy, I also find it really ineffective. The few times I've tried it, I was just told that I'm already very self-aware, so I should be fine. It's almost like you can't talk your way out of living within shitty material conditions... I try to talk to my friends about it expecting a level of solidarity, but recently I keep being told how exhausting I am even by people really close to me and it's taking everything in me to not go down a doom spiral thinking about it too hard. It feels like I have to keep so much to myself, because if I don't then I'll lose the little support I have from those who do still care more than most.
Solidarity with you comrade, I hope for better days ahead for all of us.
:::
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Ivysaur - 12mon
Ironically very tired of my tangible self-improvement and seeing myself happy in a world that I can't exist in. god damn just wear masks i swear to god
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Ivysaur - 12mon
I keep relapsing back to bad habits and things I have been working on which I know benefit me and even smaller things which have managed to stick and make me feel good eventually fizzle out to anhedonia because I have no world to share the joy with anymore. When/if we ever get through all of it I'll never forget. I'm never going to forgive these people. Why on earth do anything, then? I'll let you know when I have the answer.
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hexbee [she/her] - 12mon
I have no world to share the joy with anymore
You put that very well. I'm going through something similar, I'll let you know if I figure it out as well ༎ຶ‿༎ຶ
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roux [they/them, xe/xem] - 12mon
Maybe a bit of a bloomer post but I guess it turns out my autistic pattern recognition and "systems of systems" way of looking at stuff is helping me a lot at my job.
I don't wanna take all the blame because some routes are easier than others but my preferred route is in my neighborhood and I guess I can average up to 20-24 stops an hour and even higher on occasion. Our DSP dude(the one I broke down to about my autistic superpower of always getting fired) has been talking me up to others too. I guess I'm also on full time after holiday season is over as well(according to him at least).
Yesterday, I had that rural route that I fucking hate, but I had 20 extra stops this time but also finished 20 minutes early(and went 15 minutes out of my way to drop off a package that got mixed up and added to my bags) so definitely showing some improvement lol. But the work is hard and I'm tired like all the damn time and my legs are killing me.
Also, I get to jam out to music and I'm mostly by my self all day so there is that. The bullshit about Amazon drivers not having time to take breaks and how they pee in bottles is real though.
In any case, I'm gonna go and start preparing mentally for family shit. I hate holidays.
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hexbee [she/her] - 12mon
I love my disabled comrades! ( ˘ ³˘)♥
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star_sparkling_soda [they/them, he/him] - 12mon
🫶🏼🫶🏼🫶🏼🫶🏼
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Eevoltic [she/her] - 12mon
same :) 💜
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Ivysaur - 12mon
back at ya
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PurrLure [she/her] - 12mon
So I might have gotten a sneak peek at being let go from my job after over half a decade of service. Let me explain:
Basically, I WFHed most of the week and everything worked normally. I'd love to take the whole week off, but I don't get any paid days off. So I try to clock into the office today, (they told us we had to, otherwise I wouldn't have bothered), and my badge doesn't open up the gate. I call security since local admin is on holiday, and they tell me my badge is inactive. Suddenly, dozens of online horror stories pop into my head of people suddenly getting laid off with no warning. Their badges simply stop working, and their computers refuse to log in. I rush back home to test the work PC. It logs me in as normally as it did the day before. I contacted everyone I could about this and 2 hours later no one has a certain answer for me for better or for worse, because it's a holiday week.
So then I'm wondering what if someone in upper corporate decided to let me go because the previous week I got a little too sassy on a "private" teams chat, and no one else is going to be notified until Monday because it's easier to simply finish out the week on the timesheet? Maybe it's because I brought up wanting disability accommodations a couple of weeks ago, but had to hold off until next year to show them proof. Or maybe I'm just being anxious, and the office part of the building is currently undergoing repairs that none of us were notified of ahead of time because admin are real employees, which means they get to take paid time off. Maybe the gate is just old and sucks. Maybe the security misheard the info I gave them over the janky gate phone. Maybe I'm paranoid, or maybe I'm right, and I need to max out my hours this weekend even though I was going to relax, because I'll have plenty of time to relax when I'm unemployed and poverty is constantly looming over my head. Very cool and very normal system we have going on here.
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large_goblin [he/him, comrade/them] - 12mon
Good luck! I wish I could say something more reassuring but I'd be in an anxiety spiral as well. I can only imagine revoking computer access would come before your door pass if they did want to let you go.
I have a lot less protections against being let go in my new role than I used to so I'm hesitant to request any accommodations because it'll set off a chain of what ifs in my head.
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Ivysaur - 12mon
Against my better judgment I made a vent post in the ZeroCovidCommunity sub about not finding joy in socializing with non-maskers. I was immediately reminded that even your allies think you are being “unreasonable” for judging people who don’t mask lol. sorry bitch I’m judging all of you. no I can’t safely or comfortably go to a sauna full of unmasked people masked because the mask stops working when it’s wet, dipshit. I hate everyone
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Ivysaur - 12mon
Live Ivysaur reaction:
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roux [they/them, xe/xem] - 12mon
That moment when you completely forget your mask and walk out of the bathroom doing weird ass cryptid robot-arm things and your allistic friend is over.
Happened the other day and I didn't realize I was doing it. Just arms outstretched and my forarms hanging down and swinging at the elbows. He sort of pantomimed it and was like "what is this?" #JustAutismThings
And tbf, he knows I am autistic and he's also neurospicy anyways. It was mostly ok but still a bit embarrassing.
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hyrax [pup/pup's, mirror/your pronouns] - 12mon
Wawa Wawa!! 🎄❄️
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ashinadash [she/her] - 12mon
Good post !
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star_sparkling_soda [they/them, he/him] - 12mon
Patient advocacy related question!!
::: spoiler cw, mention of cop + ER, nothing graphic, a question for a friend
___ Question, how to advocate for friend over the phone if they need me when they are in ER or in a situation with cops? :((( I have never ever advocated for someone in a medical setting, or medical emergency or if cops are involved and I really need to learn this skill!! Tysm!
:::
Also you can remove the ___ they are just a placeholder
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star_sparkling_soda [they/them, he/him] - 12mon
Thank you so much
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hexbee [she/her] - 12mon
Maybe @TerminalEncounter@hexbear.net knows something about this?
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TerminalEncounter [she/her] - 12mon
::: spoiler spoiler
If you can't go to the hospital with your friend, I would have your friend phone you so you can speak with the nurses. You can call the unit your friend is on (ER right now) as well and ask about them. You might feel like you're being annoying, but that's okay. If you're there support person it will help them and the team to have you involved.
So long as your friend is okay with it, have the doctors or nurses explain all the medications and interventions to you and have them explain what the team thinks your friend is sick with or needing. The team will need your friends consent for a lot of procedures, there are some pretty limited circumstances in which they wouldn't have capacity to make their own decisions. Even if they're in against their will, in a psychiatric hold for example, they still most likely are allowed to refuse medications or procedures (even getting vitals). I would advise sticking with what the doctors say is best but use your judgement about what would work best for your friend.
For the police, they can't really ask much besides your identification unless you volunteer information willingly. I'll leave it to you to decide if it's appropriate to cooperate with them or not, but keep in mind most lawyers still get their own lawyers when being interviewed by the police. Sometimes they get more leeway depending on the circumstances and if they have warrants (Im pretty sure they need a warrant to get a BAC but they lean on nurses that aren't very sympathetic or just don't know and sometimes they intimidate patients too for the same).
Probably the number one thing you can do is be there (in person) with your friend if at all possible. A hospital can be quite frightening, ER can be pretty loud and intense.
:::
5
ashinadash [she/her] - 12mon
::: spoiler Downer fuckin post cw chronic pain mention of vomit
My better half and I went out on a cartrip with my dad to get my brother from the airport a few towns over, he sucks way worse at driving than he did ten years ago tbh.
Aside from the wash of old small towns making me feel weird, I could not last the full five hours in the car and right at the end I fuckin puked. Probably my first genuine car sickness in my life, which figures between bad driving, the car being musty (he has a dog and never washes it) and my fuckin body deteriorating.
Thing is I guess it hurts A LOT because various parts of my ribcage haven't stopped screaming at me since. It hurts to even use my arms for most stuff, lmao. Kinda sucks shit but not entirely unexpected. Two days later and I still do not feel better.
:::
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Moss [they/them] - 12mon
I've managed to catch the flu twice this winter and covid earlier in the year, so I think my already damaged lungs might never recover
8
TheChemist [he/him] - 12mon
I had some neat Christmas gifts. Although I spent Christmas having a cold. Even now, for some reason, I have been getting winded a lot more easily. In addition, it appears I will once again be spending New Years Eve alone. It will be for the second year in a row. But at least my Christmas Blues are over.
Due to Alexythimia and Depression, I have never felt what joy is, or have been able to identify what happiness is. But I have gotten used to the idea already.
khizuo in disabled
Disabled Community Megathread December 23rd — December 29th
Hi! How are we all holding up? Any wins? Any frustrations? This is the space to discuss them all!
As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:
Mask up, love one another, and stay alive for one more week.
Update: $363 still needed to book movers and cleaners for Mem! https://hexbear.net/post/4151798
hi hi star here! thank you so much for reposting
I finally dragged Mem's years old friend here https://hexbear.net/post/4160129 (points eagerly)
>:3 Kir's a fellow disabled trans comrade, lol the unmedicated adhd is very obvious on both of us.. please give him a big warm welcome and check out his art works, as he intends to stay :D
He actually garnered a bit of reputation on COVID conscious twitter for painting masked portraits for folks for $20 each to support Mem! it's a huge discount because time and effort wise it really should be more, but, we are trying our hardest and best to make it however bit easier we can, as we just want Mem to be able to have the barest of necessities to continue to survive :(( so please! gift us with at least your attention! Not even for ourselves! I bow with sincerity.
We are both doing commissions for Mem's bare survival minimums! I will draw almost whatever you want for however much you can pay, Kir's starts at $20! a very flexible price point, eheh... please allow yourself to be enticed, we are passionate drawers and even more passionate friends! We are very very worried as the last donation to Mem was 8 hours ago, and we'd do anything to lessen the labor Mem has to do while already being cyberstalked online!
ty for reading ;; (hand heart!)
Another week, another eternity of being patronized by leftists for caring about covid still :)
Will it actually take another pandemic for leftists to just put on a goddamn fucking facemask? Find out in the next episode of hellworld! ಠ︵ಠ
with leftists like these.... (wince)
I brought some masks to my party AGM earlier this month, offering them for both protection from COVID in the enclosed space of the office, and for mitigating the cops facial recognition at the Palestine rally.
One dude who's a nurse took one and informed the others that they probably should wear them in enclosed spaces, but only one other person did and he kept taking it off. (granted, he was leading the meeting and talking the most, and it was mostly to drink water.)
I'm thinking of slowly bringing it up more. Try to get other's to be more covid conscious. I'm planning to use the oncoming birb sickie to push it. Something along the lines of "yeah you're going to need to soon anyway with the way things are going. May as well start now."
Anti-maskers won. It sucks.
Well-meaning advice is so frustrating to deal with. My mom keeps researching my disability online and I honestly want to tell her to stop doing it because she keeps coming up to me with stuff like "I read on xyz that this helped this person cure me/cfs" and every time I need to tell her that this disability is highly variable, that the only consistently proven method of dealing with it effectively is pacing and rest and that just because one thing worked for one person does not mean that it will work for everyone with me/cfs (because if eating a specific food cured me/cfs we would all be doing it already, lol.)
Today she came up to me with a "I read online that weight training is important for people who struggle with fatigue" and now I'm worried that she's actually going to make me do it when again, this is not something that is proven to work consistently. I'm already at my limit of activity and I seriously can't handle adding some kind of weight training regimen on right now. I feel bad for complaining because I know she cares but I just wish she could leave me alone and stop fixating on the idea that I will someday be "cured".
Yeah it would be fine if she just cared, but she's actually struggling to accept the reality of the situation and then putting the denial back onto you to deal with. It sounds really exhausting on top of everything else that must be so fucking exhausting already...
::: spoiler yapping about my own shit Reminds me of how my extremely chud parents, after someone in their family was diagnosed with cancer, tried to convince them to not go through with chemo, because "these natural remedies have healed this person in this way in a story I saw online!" It's so exhausting for the person who's actually going through it, especially because my parents were being so insistent on it. Being alone for the holidays sucks, but it actually feels much better than spending it with them tbh :::
Also hi I’m back sorta not really maybe I don’t know I can’t stop yapping. The kind words some of you left for me meant a lot. World mostly sucks but not all of it, must remember!
Reporting for revolutionary yapping duty o7
welcome back! (˘︶˘).。*♡
I’m late to this response but Steven Universe is so good and amethyst is the best
Not too late if the thread is still unlocked!
That show forces me to feel good about being trans, which I hear is what you want lol
I've been struggling with my type 1 diabetes for a few years by now (today is ironically my diagnosis anniversary, it's been almost 30 years). Recently, especially the mental toll of the constant monitoring has been driving me nuts. There really is no way out of this one, and even though I never believed there would be, the realization that it is actually not curable has been making my depression worse. I wonder if anyone here has any tips for dealing with this sort of thing. I'd really like to go back to ignoring I have it for 99% of the day.
I have had t1 for 20 years and I don’t think this is possible unless you are very wealthy and can afford the fancy pumps + monitors they have now. Even then I still don’t really think I prefer it over manual injections and monitoring, but I’m possibly a bit of a freak anyway + Bluetooth tech sucks shit and is unreliable and I DO NOT trust that shit with my life-saving medication lmao. tbh I went through (very unhealthy) phases of “I wish I could ignore this” and it took more than one hospitalization under ketoacidosis to tell me it’s never going to happen. I am not an abled person and you are not an abled person and that is ok. There is nothing wrong with that. I take pride in it now. I’m not going anywhere, at least if I have anything to say about it, so people are going to have to fit around me if they want my company, not the other way around, and I’m not sorry about it anymore. It’s not going away, like you said, and it’s annoying, but that’s the beginning and end of it for me these days. There is not much point in making it harder for ourselves by feeling bad we can’t be like the people who give the least shits about us I reckon.
If this is less a matter of psychology and more practicality…I don’t really have a satisfactory answer. Life gave us a shit hand, but we’re not the only ones. Seeing people like me and you and people amid all other types of disability keep on keeping on regardless (and maybe even happily!) is what empowers me, trite as it sounds. Another thing that keeps me grounded is thinking about animals and pets, creatures of nature with missing limbs and eyes and etcetera. I cant possibly imagine what they’re thinking, but maybe they’re not thinking much about it all beyond “this is how it is, huh, ok.” and they carry on and live. That in its own way is empowering to me, too. If they can do it, so can I.
there IS promising research in China actually for a cure for t1 (genuinely!) and my partner has the article bookmarked but I don’t have it on me (when I find it I’ll links it); if nothing else, maybe keep in mind that things are happening, still!
Thank you so much for your reply! It's good to read something like this from another diabetic. You know how trite and annoying it feels when a doc tells you the same shit but you're like "You don't even know what I'm going through, how are your words supposed to inspire any type of optimism here??" Anyway, I'm glad to hear it from someone who actually experiences the same feeling. Thank you again.
And to put your mind at ease, I really REALLY agree with you on the CGM and pump systems. I don't trust this shit as far as I can throw it, and I unfortunately got talked into one of these newer CGMs, and it's been robbing me of my sleep for over a year. It's frustrating, doesn't give you the right type of info (and when you lie down on the bloody thing, it'll lose contact immediately). I wanna have a good scream about it, and sometimes I just do, so be assured that I am insulting the insufficient and unhelpful tech every day of the week, and now I'll be thinking of you too while I do it. I'll use pens until my last breath, nothing is going to get a pump on my body.
As for the psychological/practical difference... it's hard to distinguish for me, so let me explain: I have never had to go to the ER bc of the diabetes, but that doesn't mean you can't ignore it. You know how easy these things become as routines go, so you just keep going through the motions, but you do stuff like ignoring your body's signals for as long as you can, not taking glucose when you really should, or just eating junk food when you really shouldn't but using insulin to level it out. The older I get, however, the less my body really accepts me neglecting it. It's not like I'm ancient, but it could take glucose levels over 300 as if it was nothing when I was a kid, but now decides to go into vomiting mode. So as these physical symptoms grow stronger, my neglect for it can't go on. Which brings us to the practical part, I am doing everything I can to avoid getting in these tight spots, but it takes up so much time of the day that it sometimes feels like a 24/7 job of monitoring, cursing yourself and/or the diabetes, and then fixing whatever got fucked up in the process. And this is the part that's been weighing on me immensely.
I will try to take your advice to heart, however, and hope that it somehow helps me... to at least tolerate it. I'm not too fond of my body in general (unrelated to the disability), so it's hard to be kind to myself when it's indeed coming from something that I can't exert actual control over. I'm just a captain on a sinking ship without a rudder, trying to get the water buckets filled up so the bloody ship doesn't sink. I'm not moving anywhere, but I haven't drowned yet either.
Edit: P.S.: I'd really love to read the article!
Chinese woman finds type 1 diabetes reversed after stem cell transplant in world first
This was the last thing I read about it but there might have been more updates since then, I’m not sure. Here’s a link to the research paper as well if you want to dig into the details more.
::: spoiler discussion of the crimes of chiropractors It's only finally occuring to me in my mind that: in my teens I had persistent lower back pain and wanted my sternum fixed. No doctor would and still none will operate with regard to either of those, so my mother took me to a fucking chiropractor instead. Presumably her ridiculous workplace subsidised it?
So now I have so much pain throughout my torso in general that it makes the lower back pain almost unnoticeable, and my body is failing as even standing and walking becomes more difficult. It's not very cash money, I'd say. :::
:( fuckkkk. so sorry you went through that, comrade.
It goes how it goes, I wonder if this counts as child abuse though tbh. Love that they were all fucked up about letting me decide my gender as a teen but were happy to let some unlicensed crackpot fuck up my spine though.
......in my humble opinion,,,,, I think that is :( why wouldn't it be would be the question. (hug if wanted)
It's weird because my parents were "good" in the sense it was never like physical violence type abuse and they seemed ok, but they did all kinds of funny shit anyway I guess...
My OCD has really been going haywire recently, ugh.
::: spoiler depression I've been incredibly depressed lately but every time I try to type out a post about it I delete it and give up because I think that I shouldn't burden too many other people with that knowledge (not that nobody knows, but still.) Well I guess today is the day when that post finally gets made. I went a few months earlier this year where I wasn't constantly depressed 24/7, they were the best my mental health had been in a long while, and I thought that it was the start of genuine improvement — but now it's back to being bad again, maybe even worse than usual. Maybe I should talk to someone about this, but therapy just never seems to stick for me and I feel bad talking to people about being sad because I know everyone is dealing with a lot. I don't even feel like I have much energy to post on hexbear anymore, lol. :::
Life tends to suck a lot of the time. I have no advice, just solidarity.
I don’t know what you’re supposed to get out of therapy tbh. I guess it helps privileged people who don’t know how to think for themselves? Metacognition doesn’t do much for misery.
::: spoiler spoiler
"Burdening" someone with the knowledge of what you're going through isn't anywhere near the same as actually going through it, and I think it's fair to expect solidarity when sharing these kinds of things. Imo the problem is more the normailsation of suffering and how hard-found and hard-fought genuine solidarity is for disabled folks. Edit: or even just all the comrades' capacities being battered to shit by increasing precarity since 2020 tbf
I'm sorry you're doing worse again after a short spell of doing a little better. I find that I struggle to make full use of those better periods, because I'm already expecting it to get worse again, which makes it feel pointless. But I know that's not very revolutionary optimism of me and I'm trying to work on it.
In terms of therappy, I also find it really ineffective. The few times I've tried it, I was just told that I'm already very self-aware, so I should be fine. It's almost like you can't talk your way out of living within shitty material conditions... I try to talk to my friends about it expecting a level of solidarity, but recently I keep being told how exhausting I am even by people really close to me and it's taking everything in me to not go down a doom spiral thinking about it too hard. It feels like I have to keep so much to myself, because if I don't then I'll lose the little support I have from those who do still care more than most.
Solidarity with you comrade, I hope for better days ahead for all of us. :::
Ironically very tired of my tangible self-improvement and seeing myself happy in a world that I can't exist in. god damn just wear masks i swear to god
I keep relapsing back to bad habits and things I have been working on which I know benefit me and even smaller things which have managed to stick and make me feel good eventually fizzle out to anhedonia because I have no world to share the joy with anymore. When/if we ever get through all of it I'll never forget. I'm never going to forgive these people. Why on earth do anything, then? I'll let you know when I have the answer.
You put that very well. I'm going through something similar, I'll let you know if I figure it out as well ༎ຶ‿༎ຶ
Maybe a bit of a bloomer post but I guess it turns out my autistic pattern recognition and "systems of systems" way of looking at stuff is helping me a lot at my job.
I don't wanna take all the blame because some routes are easier than others but my preferred route is in my neighborhood and I guess I can average up to 20-24 stops an hour and even higher on occasion. Our DSP dude(the one I broke down to about my autistic superpower of always getting fired) has been talking me up to others too. I guess I'm also on full time after holiday season is over as well(according to him at least).
Yesterday, I had that rural route that I fucking hate, but I had 20 extra stops this time but also finished 20 minutes early(and went 15 minutes out of my way to drop off a package that got mixed up and added to my bags) so definitely showing some improvement lol. But the work is hard and I'm tired like all the damn time and my legs are killing me.
Also, I get to jam out to music and I'm mostly by my self all day so there is that. The bullshit about Amazon drivers not having time to take breaks and how they pee in bottles is real though.
In any case, I'm gonna go and start preparing mentally for family shit. I hate holidays.
I love my disabled comrades! ( ˘ ³˘)♥
🫶🏼🫶🏼🫶🏼🫶🏼
same :) 💜
back at ya
So I might have gotten a sneak peek at being let go from my job after over half a decade of service. Let me explain:
Basically, I WFHed most of the week and everything worked normally. I'd love to take the whole week off, but I don't get any paid days off.
So I try to clock into the office today, (they told us we had to, otherwise I wouldn't have bothered), and my badge doesn't open up the gate. I call security since local admin is on holiday, and they tell me my badge is inactive. Suddenly, dozens of online horror stories pop into my head of people suddenly getting laid off with no warning. Their badges simply stop working, and their computers refuse to log in. I rush back home to test the work PC. It logs me in as normally as it did the day before. I contacted everyone I could about this and 2 hours later no one has a certain answer for me for better or for worse, because it's a holiday week.
So then I'm wondering what if someone in upper corporate decided to let me go because the previous week I got a little too sassy on a "private" teams chat, and no one else is going to be notified until Monday because it's easier to simply finish out the week on the timesheet? Maybe it's because I brought up wanting disability accommodations a couple of weeks ago, but had to hold off until next year to show them proof. Or maybe I'm just being anxious, and the office part of the building is currently undergoing repairs that none of us were notified of ahead of time because admin are real employees, which means they get to take paid time off. Maybe the gate is just old and sucks. Maybe the security misheard the info I gave them over the janky gate phone. Maybe I'm paranoid, or maybe I'm right, and I need to max out my hours this weekend even though I was going to relax, because I'll have plenty of time to relax when I'm unemployed and poverty is constantly looming over my head. Very cool and very normal system we have going on here.
Good luck! I wish I could say something more reassuring but I'd be in an anxiety spiral as well. I can only imagine revoking computer access would come before your door pass if they did want to let you go.
I have a lot less protections against being let go in my new role than I used to so I'm hesitant to request any accommodations because it'll set off a chain of what ifs in my head.
Against my better judgment I made a vent post in the
ZeroCovidCommunity sub about not finding joy in socializing with non-maskers. I was immediately reminded that even your allies think you are being “unreasonable” for judging people who don’t mask lol. sorry bitch I’m judging all of you. no I can’t safely or comfortably go to a sauna full of unmasked people masked because the mask stops working when it’s wet, dipshit. I hate everyone
Live Ivysaur reaction:
That moment when you completely forget your mask and walk out of the bathroom doing weird ass cryptid robot-arm things and your allistic friend is over.
Happened the other day and I didn't realize I was doing it. Just arms outstretched and my forarms hanging down and swinging at the elbows. He sort of pantomimed it and was like "what is this?" #JustAutismThings
And tbf, he knows I am autistic and he's also neurospicy anyways. It was mostly ok but still a bit embarrassing.
Wawa Wawa!! 🎄❄️
Good post !
Patient advocacy related question!! ::: spoiler cw, mention of cop + ER, nothing graphic, a question for a friend ___ Question, how to advocate for friend over the phone if they need me when they are in ER or in a situation with cops? :((( I have never ever advocated for someone in a medical setting, or medical emergency or if cops are involved and I really need to learn this skill!! Tysm! :::
I think @ReadFanon@hexbear.net (if online?) might know something about that.
Also you can remove the
___they are just a placeholderThank you so much
Maybe @TerminalEncounter@hexbear.net knows something about this?
::: spoiler spoiler If you can't go to the hospital with your friend, I would have your friend phone you so you can speak with the nurses. You can call the unit your friend is on (ER right now) as well and ask about them. You might feel like you're being annoying, but that's okay. If you're there support person it will help them and the team to have you involved.
So long as your friend is okay with it, have the doctors or nurses explain all the medications and interventions to you and have them explain what the team thinks your friend is sick with or needing. The team will need your friends consent for a lot of procedures, there are some pretty limited circumstances in which they wouldn't have capacity to make their own decisions. Even if they're in against their will, in a psychiatric hold for example, they still most likely are allowed to refuse medications or procedures (even getting vitals). I would advise sticking with what the doctors say is best but use your judgement about what would work best for your friend.
For the police, they can't really ask much besides your identification unless you volunteer information willingly. I'll leave it to you to decide if it's appropriate to cooperate with them or not, but keep in mind most lawyers still get their own lawyers when being interviewed by the police. Sometimes they get more leeway depending on the circumstances and if they have warrants (Im pretty sure they need a warrant to get a BAC but they lean on nurses that aren't very sympathetic or just don't know and sometimes they intimidate patients too for the same).
Probably the number one thing you can do is be there (in person) with your friend if at all possible. A hospital can be quite frightening, ER can be pretty loud and intense. :::
::: spoiler Downer fuckin post cw chronic pain mention of vomit My better half and I went out on a cartrip with my dad to get my brother from the airport a few towns over, he sucks way worse at driving than he did ten years ago tbh.
Aside from the wash of old small towns making me feel weird, I could not last the full five hours in the car and right at the end I fuckin puked. Probably my first genuine car sickness in my life, which figures between bad driving, the car being musty (he has a dog and never washes it) and my fuckin body deteriorating.
Thing is I guess it hurts A LOT because various parts of my ribcage haven't stopped screaming at me since. It hurts to even use my arms for most stuff, lmao. Kinda sucks shit but not entirely unexpected. Two days later and I still do not feel better. :::
I've managed to catch the flu twice this winter and covid earlier in the year, so I think my already damaged lungs might never recover
I had some neat Christmas gifts. Although I spent Christmas having a cold. Even now, for some reason, I have been getting winded a lot more easily. In addition, it appears I will once again be spending New Years Eve alone. It will be for the second year in a row. But at least my Christmas Blues are over.
Due to Alexythimia and Depression, I have never felt what joy is, or have been able to identify what happiness is. But I have gotten used to the idea already.