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.
hexbee [she/her] - 10mon
I'm finally getting my testosterone this week!
Amazing news!
13
khizuo [ze/zir] - 10mon
thank you!!!
6
DisabledAceSocialist [comrade/them] - 10mon
Congratulations! Hope it's everything you hoped for.
5
DisabledAceSocialist [comrade/them] - 10mon
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?
11
gingerbrat [she/her] - 10mon
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.
6
DisabledAceSocialist [comrade/them] - 10mon
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.
7
gingerbrat [she/her] - 10mon
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
5
DisabledAceSocialist [comrade/them] - 10mon
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!"
6
gingerbrat [she/her] - 10mon
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.
4
DisabledAceSocialist [comrade/them] - 10mon
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.
5
gingerbrat [she/her] - 10mon
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?
3
Meltyheartlove [love/loves, comrade/them] - 10mon
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.
1
un_mask_me [any] - 10mon
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.
6
DisabledAceSocialist [comrade/them] - 10mon
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.
6
un_mask_me [any] - 10mon
It's been pretty busy over there, and with the migration/auction crap I think things are getting missed. I'd like to think people wouldn't mind seeing multiple posts, especially if it helps you with getting seen! It's not wrong to ask for things you need, and you really need these items, they aren't long term goals or anything crazy.
7
imogen_underscore [it/its, she/her] - 10mon
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.
8
CupcakeOfSpice [she/her, fae/faer] - 10mon
Another month, another psychotic episode just before injection day. I guess it's not too horrible. It used to be every night before pill time, it's just not a pleasant experience still.
7
CupcakeOfSpice [she/her, fae/faer] - 10mon
Now, likely because of the snowpacolypse affecting a chunk of the country, my appointment for today got canceled. And nobody's in to reschedule, so I get to sit in limbo until the weather improves.
4
Kuori [she/her] - 10mon
hope you are all as okay as can be.
7
un_mask_me [any] - 10mon
5
gingerbrat [she/her] - 10mon
4
Blockocheese [any] - 10mon
Had a very long drive home and my poor circulation didn't appreciate it and took it out on my joints :/
7
Beetle [hy/hym] - 10mon
6
TheSpectreOfGay [hy/hym, she/her] - 10mon
same
5
DisabledAceSocialist [comrade/them] - 10mon
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.
6
Ivysaur - 10mon
just caught a 3 day ban on reddit for telling some guy "malingerer hunters like you need to be taken to a country road and shown the view"
a ban for saying i wanna go on a joy ride with someone! smdh
6
DisabledAceSocialist [comrade/them] - 10mon
Reddit is awful. You can say the most awful things on there - glorifying nazis, paedophilia stuff, misogyny, racism, ableism - and get away with it. But they ban you for stupid things. I got perma banned for calling someone a child molester. I called him this because he wrote a several paragraph long post about how sexually attractive underage children are, and how they are better in bed than adults. He did not get banned for saying that, but I got banned for calling him a child molester. Make it make sense.
9
hexbee [she/her] - 10mon
4
Belly_Beanis [he/him] - 10mon
Fuck the ban...that person should have been turned into the authorities by the website staff. I guess when Maxwell is one of the site administrators, you can't do that.
khizuo in disabled
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:
Mask up, love one another, and stay alive for one more week.
Amazing news!
thank you!!!
Congratulations! Hope it's everything you hoped for.
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?
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?
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.
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.
It's been pretty busy over there, and with the migration/auction crap I think things are getting missed. I'd like to think people wouldn't mind seeing multiple posts, especially if it helps you with getting seen! It's not wrong to ask for things you need, and you really need these items, they aren't long term goals or anything crazy.
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.
Another month, another psychotic episode just before injection day. I guess it's not too horrible. It used to be every night before pill time, it's just not a pleasant experience still.
Now, likely because of the snowpacolypse affecting a chunk of the country, my appointment for today got canceled. And nobody's in to reschedule, so I get to sit in limbo until the weather improves.
hope you are all as okay as can be.
Had a very long drive home and my poor circulation didn't appreciate it and took it out on my joints :/
same
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.
just caught a 3 day ban on reddit for telling some guy "malingerer hunters like you need to be taken to a country road and shown the view"
a ban for saying i wanna go on a joy ride with someone! smdh
Reddit is awful. You can say the most awful things on there - glorifying nazis, paedophilia stuff, misogyny, racism, ableism - and get away with it. But they ban you for stupid things. I got perma banned for calling someone a child molester. I called him this because he wrote a several paragraph long post about how sexually attractive underage children are, and how they are better in bed than adults. He did not get banned for saying that, but I got banned for calling him a child molester. Make it make sense.
Fuck the ban...that person should have been turned into the authorities by the website staff. I guess when Maxwell is one of the site administrators, you can't do that.
Stay safe and stay sane, comrades