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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.

    • 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.

        • I get it tho, in this situation, I'm not sure I could "settle" on a decision either. It's not like you're supposed to decide between sweet treats or salty treats, it's an important decision, and a costly one at that, unfortunately. I hope that eventually it'll get better with the infections, but for the time being, this limbo between things you could or couldn't do is grueling and I'm sorry you are still going through it

          • Thanks. I just know if i don't finish the surgeries then next year I'll be like "Why didn't i do it! It would be over now!"

            • Probably, yes. It'll be hard until then, but I'm sure eventually these surgeries will pay off so you can at least walk around wearing shoes again.

              • I am so looking forward to it. Due to having had a stroke and having a weak left side, walking can be a bit painful, but it's nothing compared to having infected surgical wounds and not being able to wear shoes. I'm so frustrated trapped indoors day after day, having to rely on my landlady to take me if I need to go somewhere. I can't wait to be free and independent enough to walk around outside on my own again. And my mental health is even worse than usual. Before even if I was in pain due to issues caused by the stroke, I could at least walk down to the beach, just 5 minutes away, and sit out there for a while. Staring at 4 walls all day feels like being in prison.

                • It is basically a prison, being trapped in the same room/apartment. I'm glad your landlady is taking you places, that's more than most landlords/ladys would do.

                  You mentioned the stroke before, and if I'm being too curious please let me know, but was it a result from your cancer/other health complications or was it unrelated?

                  • Yeah she's adding the petrol cost to the total amount I owe her when I get my benefits sorted and get backpay. I need to pay her for the driving with the "mobility" part of my personal independence payment when, and if, I get it reinstated.

                    Everything that has happened to me has been as a result of the cancer treatment. The stroke (which resulted in partial sightedness and balance/coordination/walking issues), some heart issues, developing food intolerances and interstitial cystitis, the foot infections (cancer treatment can cause foot issues like diabetes does and my immune system is weak so i can't fight off infections easily) and migraines. What angers me is that i was never warned about this. When they finally diagnosed my cancer (after three and a half years of calling me a hypochondriac and refusing to do any tests) they said the cancer treatment wouldn't cause any problems and I would never know there had been anything wrong with me. When these issues started they're like "Oh yes, this is a known side effect of your treatment." So I didn't give informed consent to the treatment because I was never informed this would happen. I would sue them but I don't have the energy and have too much on my plate already. I truly hate the medical profession.

                    • There just had to be a hook on the kindness, didn't there ._. this is horrific, why does anyone think this is okay? (outside of hexbear, naturally)

                      I totally get not having enough energy to deal with this, but I really think they should be sued for this. It very likely isn't just you who's been lied to about these side effects. And holy shit the list of side effects is long.

                      • It was thyroid cancer and there's a website called "Stop the thyroid madness" where people talk about issues they've had with the treatment and how they weren't warned about it (not only for cancer but other thyroid issues too). It's really common but most thyroid patients are just too tired and brain foggy to take on suing the medical establishment. If there was ever a class action where I didn't have to do much I would put my name down but until then I just can't deal with it.

                • I had been in a major accident previously and was not in a condition which left me with very little mobility and do normal things like eat and since I was poor and no one came to visit, I had a charity group approach me for help I was moved to a mental ward so that bit never happened. I am ignorant on how it works but I was wondering if someone knew and could help you reach them. Everything you said sounds quite painful and sad and I hope it gets better. I feel quite incoherent and I apologize if anything I said was insensitive in anyway.

                  • What was the name of the charity group, and what kind of help did they offer?

                    • I am really sorry :( that was over eight years ago and I was put on morphine so I don't think I would be able to remember something like that but my guess is that it was local to the country. They offerered to help me with groceries, cooking, cleaning up, taking me out and chat to not make me feel lonely, help me keep clean and feed me (I couldn't use my arms and one leg had limited mobility at that time). It was the hospital that set it up for me but I usually don't hear about hospitals doing that sort of thing for people but asking them (I would suggest social workers that can be seen around in hospitals. Asking a nurse to see if they have seen a social worker might probably make it easier) might still be worth the try and probably someone that works in one.

56 comments