Disabled Community Megathread from December 15th to December 28th

I feel bad for deleting the post I made while panicking yesterday, considering all the effort people put into replying (thank you @BilduEnjoyer@hexbear.net , @i_drink_bleach@hexbear.net , @Nocturnelle@hexbear.net , @ratboy@hexbear.net , @Snort_Owl@hexbear.net , @Salah@hexbear.net and @RedSturgeon@hexbear.net )

I got a bit overwhelmed and deleted it but I read and took into account all your advice. Thank you.

I found a new food processor, I got it used for like next to nothing. I'm gonna make hummus I'm so happy.

I knew my prescriptions finally being sorted by the doctor was too good to be true. There's already a problem with it. The pharmacy doesn't have the type of thyroxine I take in stock and doesn't know when they can get it - not an issue with paper prescriptions as I can take the prescription to a different chemist. But with the new dispensing system the doctor set up there are no paper prescriptions and you can't take it to a different chemist, only to the GP chemist. So I can't get my thyroxine (which I will die without - I don't mind dying but it will be a very unpleasant way to go.) So I asked the GP receptionist if I can just go back to the usual way and she's so confused by my request she doesn't know what to do and clearly doesn't care. I honestly think that to get a job as a GP receptionist you must have an IQ of less than zero and be more evil than Hitler. I asked for an appointment with the GP to get it changed back but there were no appointments left so now I'm back to having to go there at 8.30 in the morning and queue up to get on the triage list, and if the appointments run out by the time I get to the front of the queue I'll have to do this every day until I finally get an appointment. This nonsense just never ends.

I also tried to get an appointment with the podiatrist about my Achilles tendon since the physiotherapist can't see me until 12th Jan, but the podiatrist can't see me until 19th Jan. I'm so tired of how difficult it is to access basic medical care.

Only one thing has improved my mood. I found an official letter addressed to me, on the dining room table where my landlady leaves my post when it arrives. It apparently arrived a few days ago but I only just found it. Since it looked official I was worried it might be something stressful to deal with like the DWP or NHS. But I found it was a lovely xmas gift - a Sainsburys gift card. Someone from here who I'd given my address to previously must have sent it to me. I don't know who, but whoever it was: thank you! So at least one nice thing happened.

My GP is using an AI transcription thing. Gross.

Luckily they're asking for express consent so I shall simply say no, and fuck

Abled bodied people mistaking me not wanting to do something as me being unable to do it, but seeing something I physically can't do as laziness.

I got yelled at by some angry little man today. I went to sainsburys in the car with my landlady. I usually get a cooked chicken and then portion it up to last for a few days. Today I was there at 11am, when they come out of the oven, to get a fresh one and they were all cooked and ready to come out of the oven but there were no staff members around. I waited for about 10 minutes and no-one came. So I stepped in to where the staff members are supposed to be, literally just at the edge of the counter, and looked in, to see if there were any staff members behind the oven. There was no-one there so I left and went to a different part of the shop to get something else. While I was looking at the food on the shelf a very hostile young male staff member came over to me and started really aggressively scolding me in front of everyone. He said he'd seen me step behind the counter, and I shouldn't be back there. I apologised but it wasn't good enough. He ranted and raved about it and I said I wouldn't go back there again, but he kept on and on. He finished by rudely saying, "I don't want to have to tell you this again," and as he walked off he was still angrily talking about it. He was so vicious about it, and I've been the victim of random male violence before, and it's just the icing on the cake with everything thats going on already, so I know it probably sounds pathetic but it really scared and upset me. Like sorry I stepped into the staff area for literally one second but there was no-one around to ask, seems inappropriate to take whatever frustrations he's having in life out on a random customer. Couldn't he just quietly and politely say "I saw you go behind the counter, please don't go back there?" So yeah I got screeched at in front of a shop full of people on top of everything else and now I'm even more stressed.

And my left side is really flaring up again, not just the tendon but the knee, foot, everything. My landlady is going away for xmas and while it will be nice to have the house to myself I'm in no fit state to walk more than a short distance again and I'll have no-one to drive me anywhere if I need to go somewhere. I managed to get a sainsburys delivery slot for xmas eve but that's obviously more expensive than if I was able to use my free bus pass to go myself. But I don't have a chance in hell of lugging shopping home half a mile from the bus stop. Having to order for delivery because you're too crippled to carry shopping home is one of the many ways it's more expensive to be disabled. There have been times where my left side has flared up so badly I've been completely unable to walk and sainsburys has mobility scooters you can use to get around the shop if you're disabled. It's embarrassing but I have used them before. One time my achilles tendon flared up so badly I was put in a plaster cast on crutches for 10 days and I had to do my shopping in the mobility scooter during that time. But they're only for use in the shop, you can't drive yourself home in it so even if my mobility issues get bad enough to need the scooter again it won't help me with getting to and from the shop. This lack of independence is so hard, always needing someone to drive me around, or deliver, and relying on the generosity of donations to even buy food in the first place. Even the simplest things in life become overwhelmingly difficult and expensive when you're disabled. I hate being disabled, I wish I was able bodied again.

I hate how GP receptionists now won't even put you on the list to speak to a doctor by phone/get an appointment unless you announce in great detail to the entire queue/waiting room what you want to see the doctor about. Whatever happened to patient privacy? And when I said I didn't want to talk about it here and just wanted to speak to a doctor privately well that's not good enough. I said it's about changing my prescription. She said which item? I said the whole lot. She tried to make me call out each item in front of everyone and some are for embarrassing/private things that I don't want to announce in public. She argued with me about it, it's like a rite of passage now that you have to earn your right to see a doctor by loudly declaring all of your medical issues to the entire waiting room. And then she tried to fob me off by saying the prescription team would deal with it. The same prescription team who've been messing it up for a year now? No thanks. In the end I got a phone call with a doctor and she said she will leave a paper prescription with three months worth of everything on it. I guess I'll collect it on Monday and see if the dosages are actually correct for three months but I'll be amazed if they are. How can they keep making it so difficult? I've even complained to my local MP but he is useless and does nothing.

Been having near constant anxiety over the cost of healthcare that I even made a post about it. I've come to the dawning realization that I either have to: a) sell an organ b) find a sugar momma (or daddy, despite not playing for that team) c) start hookin'

I can't exactly walk out of the house and find a part time job that will accommodate me and my long covid that will provide sufficient benefits in this god forsaken state. So its either pay another 20-25k a year or join the world's oldest profession. Or I could become destitute.

Had a profound, and very depressing experience last night. I was cleaning out my Walgreens drug closet where I keep all my prescriptions and supplements, and happened to stumble on some old buprenorphine transdermal patches. I didn't even realize they were in there as I must have taken them out of the box they came in. The patches expired in 2024 (got them after one of my many surgeries long ago), so I was going to throw them out, but I figured fuck it, why not get some use out of them if I can. My arm is still in quite a bit of pain post surgery, and it was killing me, so it seemed like the opportune time. They are 10mg so I cut it in half and stuck it on my shoulder.

Hour or two pass and I just get done watching the new Pluribus (very good and thought provoking) and then I start thinking of the stars. Carol and Zosia were at a telescope, looking at the stars, and it made me think of the time the love of my life and I went out to see them one night. Except, I can't actually "see" that memory because long covid broke my brain, so while I know I did that thing and I did it with her, I can't see her. I can't see her looking up at the stars. I can't see the stars, or the telescope, or the night sky. I can't see her smile. I can't hear her laugh. There's just nothing there but the event. Then I started to cry. Like cry cry. Ugly cry. For a good 5 minutes or so. Just feeling the absolute sadness of the fact that I may never be able to remember her, or frankly anyone or anything in my life, properly. It filled me with the most profound sadness. I never cry, not in a "I'm a macho man and crying is for pussies" kind of way, more that I'm just not really able to give into my emotions like that on a normal basis because I have to be the one holding it down all the time. Then, it was just over. Just like that. I wasn't really high, I didn't feel stoned or unable to control my emotions. In that moment it just hit me like an absolute ton of bricks.

I really don't know what it ultimately means or how to process it, but since I don't have a therapist worth a damn at the moment, I wanted to at least engage with the experience a little.

You are all lovely and I hope you have a great day.

i have a doctor's appointment tomorrow but i don't wanna go i don't wanna change my meds again

Did my last stint of volunteering for the year, and my client didn't need me at all turns out. Better safe than sorry, and nice to see them being treated ok by their doctor.

The lady at the food bank saved some lactose free milk for me because she noticed i hadn't taken any of the milk every week. That was so, so, so nice of her, and I feel pretty ungrateful.

i gotta change my meds again

I hate December so much. Always been my worst month, jan and feb aint great but at least there isnt an all out gaslighting campaign that i am supposed to be happy no matter what.

Been reading a lot of the old blog posts by Ly Xīnzhèn Zhǎngsūn Brown (who wrote the list we reference for ableist language in the side bar). It's been pretty validating, even when difficult to process emotionally. Cheers to another week of stubborn survival and small moments of love and kindness.

Hope you're all having a better xmas than me. My mood is so low right now, and I'm really frustrated being stuck indoors with mobility issues and injuries again. I've realised this is never going to end. My landlady had gone to visit her daughter for xmas for a week, she left the heating set to come on for a couple of hours morning and evening. I'm absolutely freezing but scared to turn the heating on longer as she'll be angry if she comes home to a big bill. Why is the UK like this? It's considered acceptable for people to just freeze in their own homes as heating bills are unaffordable. From what I've heard in other countries it's normal and affordable for people to have the heating on whenever they need it. No wonder our houses are black with mould.

agh i hate christmas. people get mad at me for not going to things, people get mad at me for going to things and then not eating (have food trauma, can't eat infront of people, also just autism food issues), can't win

Dog has figured out it likes to soothe with my hand in its mouth. It also wants to hang out in its basket. It seeks to achieves this by dragging my hand to the basket. Just the hand though.

Can't sleep. The screaming is on.

my partner thinks I may be getting more deaf than before. She's a pretty quiet person but almost everything shes said lately I say "what?" or reply with something that had nothing to do with what she actually said. I dont like making ppl repeat themselves more than once but when I still dont fully hear it the second time I try to respond and I'm finding I'm really wrong and answering in a complete non sequitur

I'm so exhausted by how difficult it is to get medical care in the UK. One recurring issue is the fact that my prescriptions are always wrong, missing items, wrong doses, etc. I spend my entire life dealing with this nonsense, always having to go back and try to get their mistakes fixed. It got so bad I contacted my local MP and asked him to intervene. I don't know whether he did or not but last week I got a letter from the surgery asking me to come in to discuss my prescriptions. After going down there and dealing with their disorganisation and nonsense multiple times I finally managed to get an appointment to discuss this with an actual GP this afternoon. I am going to ask him to put all of my meds in the correct quantities on the screen, delete the ones I don't use any more and from now on prescribe me three months worth so i don't have to deal with this every month. Whether he will or not, who knows. They never seem to think it's a big deal causing a sick disabled person extra stress and messing up my lifesaving meds every month.

Also I tried to get a physiotherapy appointment as my general injuries like inflamed tendon and plantar fasciitis have flared up again and my knee is getting painful too. I'm on the "open appointment" list, meaning I'm a regular patient there so i'm supposed to be able to phone up and get an appointment whenever my issues flare up, instead of being on the waiting list for ages like people with new problems are. In spite of this the soonest they can see me is Feb 12th! I guess I can just be half-lame for the next two months.

So exhausted. The way medical care is run in this country makes my medical issues, stress and general problems worse than they are already instead of helping. Everything is always an uphill battle. Same as dealing with benefit/financial problems. I am sick and supposed to be resting but I constantly have to fight and struggle for every little thing like food and meds. Why don't they just legalise £uth@n@s1@ instead of killing us slowly?

https://matrix.to/#/#Hexbear_Disabled_and_ND:matrix.org

I made this Matrix room as a private space to chat for the Hexbear disabled/ND community! Like this megathread, it's for people who identify as disabled (including neurodivergent) only.

I made it invite-only with knock to join enabled, but it seems "knocking" doesn't really work, so please DM me with your Matrix username if you want to be added. I also added it to my Unofficial Hexbear Matrix Space which collects Hexbear-related rooms (that one is open, just click on the link to join).

The price of my meds went up again. They can't keep doing this. I don't care if you made the packaging a little nicer. I am being gentrified out of my medication.

Is there a Matrix room for disabled/ND users? If not, I would like to help create one.

Feels like a good Scream Into the Void kind of day.

Nooooo i had to leave the doggo behind to go homw after christmas. It is now woefully handless. His owner has already said he's pacing around looking for me nooooo

Cool so my doctors are saying there's just literally no other sleep medications that they're willing to try and if I want anything besides essentially Benadryl or Benadryl with a slightly different name I'm going to have to Shell out to a different specialist The shit sucks I'm so sick of it. None of these doctors listen none of them remotely care it's a cold world where no one wants to help and if they do their hands are completely bound Every night it feels like it takes a thousand years to pass because I wake up over and over and over again and have to restart the process and never actually get deep sleep or rest I just wait for the sun to be back up and for me to be unable to try and start the process again. im thank ful for the sleep i do get but it ist restful at all, just scrambles my brain up for a little then back to pain and confusion

There are crows and vultures that pick me, they don't eat it, they feed me my own flesh. Crowds watching me asking to shoo only the vultures, I can't tell them apart, let alone give a reason to shoo only one of them. when I started screaming, they ripped their tickets and dropped my food. only thing left beside me were black feathers.

So, obviously a big thing with autism is not understanding social stuff, at least best I understand it allistics have a more intuitive understanding of social situations/dynamics. Now a lot of the time this isn't a huge issue for me personally, I guess with time I've learned from situations around me/masked/maybe I am just unaware. Or maybe I have just mostly stayed in safe situations I've done before. Yea there's painful mistakes but overall I think they're usually realistically minor. Anyway.

Where this has been a huge issue/worry for me for a while now is being trans and talking about that and navigating that with cis people irl. I've had pretty limited to trans people irl, especially before realizing I'm trans so I haven't seen these dynamics play out. I haven't seen a newly out trans person talking to cis people about things so I have no frame of reference for how to act, or like what the social boundaries are or what's appropriate etc.

Now that I think of it never having intimate (not that intimate) conversations about feelings and things modeled for me as a child probably also did not help. But its all very stressful for me after the fact, worrying about what they might be thinking about me. Obviously a lot of it is really personal for me, I really care about women's reactions/feelings/views towards me is, and idk. I just don't know what's okay. What's uncomfortable. How to talk about any of it, its all new to me and I just don't trust my intuition for what's okay. (like yes obviously I can pick out things that obviously wouldn't be but that's not my struggle). Its all new social stuff for me. I don't have scripts for what's okay to talk about or do or get support with as a trans woman from cis women. I've opened up to quite a few people now and idk. That is not a dynamic I am used to or have seen or feels comfortable at all to me. I keep worrying long after my conversations.

Semi related but I feel like I often feel closer to people then they feel to me if that makes sense and is another thing I worry about in relation to this or any other kind of deep conversation topic.

I hope this makes sense I've been trying to figure out how to put it into words for a few days now and been typing for an embarrassing amount of time and am now exhausted. Also sorry I don't engage with these threads much, I do read them but I feel my issues are quite different then most of yours and don't know what to say. But I do care about you all.

Okay so the pelvic floor is something to protect. I just did some kegels after like a year of last doing some. I used to hate doing it because I was told by a physical therapist to do it as a workout.

Now I'm doing it for fun because I don't think of it as a workout. I think of it as a nice stretch(with no insertion get your mind out the gutter, i really mean just plain kegels) of the muscles. The kind of stretching you do with your back and sides and legs and arms. It's cathartic stretching. I greatly encourage it.

idk how exactly I feel about it but so many of my family's favorite stories of me are just me being very clearly autistic. Eating the same lunch for years on end, stories of me being overstimulated, etc. No they do not think I'm autistic.

oh h*ck new mega

I think I'm developing agoraphobia at the exact time I'm developing some kind of desire to be social, which sucks for obvious reasons

I am so depressed right now. My achilles has flared up again, I'm having trouble walking. This is just neverending. I'm basically back to being a prisoner, trapped indoors. How is this any different to a life sentence. I have even emailed multiple MPs about this (about my situation and how shockwave therapy should be available to patients, as needed on the NHS) but no-one cares. I emailed Keir Starmer and got an automated message that I won't get a response from him he only deals with his own constituents. I emailed the secretary for health and got the same message. I of course emailed my own MP but he almost never responds to any messages and when he does, it takes months. What is the point of this shitty life.

Xmas magic is opening the tofu container on the first try