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.

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56 comments

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.
  
  The brainfog and tiredness I know from friends, so I can imagine how straining a legal process must be. I hope there'll be a class action law suit against this bullshit sooner rather than later. You deserve not only justice but also your life back. It will probably never be the same again, I know, but at least you should have a chance to begin something new that isn't being-tied-to-your-apartment-all-day-every-day. Stay strong comrade
  
  Thank you. Being paid enough compensation for a one-way ticket to dignitas would be good enough for me, my life will never be worth living after all this. And I am not getting any younger.
  
  That is awful, I can't quite understand anything written on that website because of other issues I am facing right now but thank you for mentioning it. I had been taking levo all my life.
  
  I feel like levo doesn't quite replicate natural thyroid hormone, I feel very mentally different on it. I often wonder if the thyroid gland secretes some other substance which hasn't been discovered yet, so can't be put into a pill, and so we are lacking something vital.
  
  I heard that a lot after looking around a bit and there was a double blind study where they compares levo vs dessicated thyroid hormones (from pigs) and most people seem to prefer dessicated.
  
  I've read that too. But I've heard it really stinks and also I want to be vegan. Although I'm having trouble with that, since I've developed so many food intolerances as a result of the treatment. They didn't even warn me that was a risk. But after developing food intolerances to grains, fruit, beans, nuts, and some veg, the endocrinologist told me that developing food intolerances (as well as all the other side effects I've had, like the stroke) is a known side effect of over treatment with thyroxine. If I'd known that, I might have chosen a different treatment.
  
  The non-vegan bit is not an option for me either I am afraid and only few doctors give T3 with levo is what I have read because it sort of experimental.
  
  I actually was allowed to try that years ago after all else had failed to cause an improvement. At first I felt a little more energised but then I just went back to baseline. It didn't make any long term difference so they stopped prescribing 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.
  
  OK thanks. There used to be a social worker who helped me but she moved to London and the social work department has ignored me since then. I have to keep fighting and begging for every little thing.
  
  I am sorry
  that sounds really harsh. I have had a similar problem with a social work department because the person in charge had left. They assigned me a case worker to listen to any concerns I had. I wished to be of some help :(
  
  You have been helpful, thank you! I didn't even know services like this were an option. Now at least I know something like this exists I can try to find something like that.
  
  I really hope you find one. There must be at least a few around nearby that you can reach through the internet or someone you know. Maybe the social worker that left for london knows something about if you have someway to contact her.

56 comments