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khizuo [ze/zir] @hexbear.net

Disabled Community Megathread 2/17/25 — 2/23/25

Hi disabled comrades! I hope everyone has a good week this week (or as good of a week as one can have.) I'm super excited because I'm finally getting my testosterone this week!

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.

56 comments

  • Well, I've changed my mind again. I must go through with my next surgery. I can't keep living like this. I want it over with. It's just wearing me down, the constant infections. And it's mad that the NHS tells me what to use on the infection, but doesn't pay for it. So much for "free at the point of delivery." I made a post on mutual aid and on lemmy, asking for help getting the items I need but no-one has come through. Why does everything always have to be so difficult?

    • Sorry it's been such a mess, and that it's unbearably frustrating. There's really no need for it to be so difficult, and knowing it's designed to be unhelpful just compounds the situation.

      I know it's always a gamble, but would you able to post on the mutual aid comm again, or shit...would you like me to make a post on your behalf? Just to get you some visibility or a post during a different time zone. Idk, apologies if I'm grasping at straws when you're just trying to vent. I really hope the surgery helps and goes well.

      • I made a post yesterday asking for medical supplies: iodine, nitrile gloves and shoe covers. Someone said they will send the iodine. But i haven't had a confirmation that they are yet. But I've had no response about the shoe covers (which i need as I can't wear shoes right now due to foot surgery) or the gloves (which I need as i have eczema with open wounds on my hands, and changing the bandages on my feet with their infection could lead to cross-contamination). Maybe I should edit my post to explain why I need them. But I'm worried if I make too many requests people will ignore me permanently. And I will have to ask for more food aid next month so i don't want to use up any goodwill right away.

    • Why does everything always have to be so difficult?

      Because somebody said it had to be and that's just how it is....

      Dark humor aside, this is fucked up. I get switching between "I'm going through with the next surgery" and "Not going through with it", given what you're suffering through.

      • I hate how much my mind changes, and how quickly. One day I'll be sure I'm cancelling the surgery and resigning myself to living like this. The next day i'm sure I will go through with it and get it over with. But I am like this with everything, my mind changes on everything all the time because there are no good options, I just choose whatever i can tolerate at the time.

  • angry today because i had to call the GP to organise prescription renewals for me and my gfs, and they charge 60 euro each. there are GPs that do it for cheaper, but other than this we actually really like our guy, he is trans friendly and helpful, goes out of his way for us, just also a greedy capitalist i guess. it would be too much stress and potential risk to try and find a new one, but every 6 months i get so fucking mad at this shit. just totally transparent, i am the gatekeeper of your lifesaving medicine, give me 180 quid for you and your gfs to continue living. it's bleak. we then get the privilege of going to the pharmacy and paying another 160 for all our meds each month (and that's while availing of a scheme that caps the cost, lol). i'm pretty prone to anger and getting juiced for the privilege of not dying is just something i can never accept or make peace with, it puts me in a bloodlust every time.

  • Well, I have pretty much made up my mind to cancel my final foot surgery in April. The recovery from the previous one is worse than I had thought. It's nearly a month later, I still can't wear shoes. I'm trapped indoors, and if I really have to go out, for an appointment or whatever, I have to wear plastic bag shoe covers instead of shoes. If I knew it would be over soon it would be tolerable, but there is no end in sight. The surgical wounds keep getting infected, this is even worse than the original infection the surgery was trying to clear. I tried wearing shoes and the pain was intense and it opened up the surgical incisions. The hospital are giving me no aftercare at all, I've tried emailing for advice, they never respond. I've tried phoning, the appropriate people are never available and never call me back. I get my dressings changed at the GP surgery but the nurses there say they don't have enough experience with this type of surgery to advise me about wearing shoes, etc. And showering is an absolute night mare. I have to wear "LimbO boots," in the shower, a plastic boot intended to keep the dressings dry. Not only are they extremely difficult to get on and off due to my mobility issues, they aren't very good and often let water in. I am so sick of this whole thing. But being virtually housebound is the worst part of all. I have mobility issues due to my stroke, but at least I could walk around outside a bit before. Even though it can be painful to walk I could still walk. I live 5 minutes from the beach, I could walk down there and sit outside for a while, have a change of scene and some fresh air. Now, unless I'm being taken to a hospital appointment, I'm indoors 24/7. This is making my mental health deteriorate on top of everything else. I regret getting the surgery, I wish I had just accepted the infection and learned to live with it.

56 comments