Hello everyone! Don’t have a lot to say, finally got around to making the new mega.
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.
7·2 days agoNew megathread tomorrow, if anybody is interested in making it do say so, otherwise I’ll make it.
Please make the next one Edie, I think we all would appreciate it
I have
Only just saw it, thank you!
we feel like you should ask this at the start of a megathread rather than at the end of it :p
I should and I will with the next one.
Hey again friends. Thank you for holding space for one another … it’s powerful just to be here with all of you.
I’m still in Gorom Camp with my trans sisters and things remain incredibly tough. We’re struggling to find safety and food, and I’m doing my best to keep my head above water while living with HIV and limited care.
If anyone has any ideas or knows of mutual aid resources I can reach out to or even just some kind words… it would mean so much. Sending strength to every disabled and neurodivergent soul out here trying to survive another week…💜
Sending all my love and energy to you comrade
not sure what i should do relating to disability aid. called them, got put on hold for over an hour before giving up. emailed them, got ignored for 3 weeks. i guess i should try to go in person.
but this isn’t even for deciding if im actually disabled or not. this is supposed to be the super short/simple check to see if im not lying about having no money. THEN they have to spend over a year deciding if i’m actually disabled, which im not sure if they will since im applying for depression/anxiety/autism
sigh
I hear you, and I’m really sorry you’re going through that. You’re not alone.
Bleh, not relevant and I shouldn’t clog up this mega
Like pup said, you are not clogging the mega, and your problems are valid. Please don’t feel like a burden, we appreciate you posting here
you arent “clogging up” this mega by posting here, thats kinda the point of the mega
also theres no such thing as “not relevant”
youre valid, and your pawblems are valid, and youre allowed to take up space and say whatever you wanna say
Well said
When I told them how the screaming of our common neighbhor sometimes woke up my other neighbhour told me how to buy weed in this apartment block thing since weed helps her sleep. Honestly that was nice of her, but also totally useless.
these tariffs are killing us
we are already disabled and broke and now the things we need to be slightly less disabled cost like twice as much 
woofThey’re really out here trying to deny us every little thing aren’t they?
Today I received an important update on my psychiatric diagnosis. I probably have autism too, aside from schizophrenia. I just need to complete a questionnaire to confirm the diagnosis.
Thank you for sharing this update. That must be a lot to process, and I really admire your openness.
Getting closer to a clearer diagnosis even if it brings mixed feelings can be such an important step toward better understanding yourself and getting the support you need.
Worst part about support groups is that often everyone else ends up getting better except me, then they move on
You’re the cure. Holy shit.
I went to my posts surgery checkup and according to my doctor, it’s healing slowly, but that’s to be expected with my medical history. She was happy to see that I got through the worst of the pain and am on the mend. However, she was highly confused when she realized my surgical stitches had already dissolved completely, even though the wound isn’t done healing. Apparently, I am, was, and probably will be a freak of nature all my life, and I quite enjoy the “surprising the doctors” energy I have. Still can’t sit, but that’ll get better soon.
Glad to hear the healing is going OK, hope you can sit soon!
Thank you love
Hope you’re doing okay too these days. How’s your walking working out so far?
Not anywhere near as well as I would like. I can wear shoes and walk for about 5 or so mins. So shopping is OK now, my landlady drives me, parks outside and i go in and get a few things (my landlady won’t go in to shops since covid). Although carrying any weight, like more than a few things in a shopping bag, at all flares the achilles up again. Walking for more than about 5 mins flares it up too. My landlady has a tiny dog who i used to walk but now all we can do is drive him to the park, walk up and down for 5 minutes then drive home. So apart from these short trips I am still stuck indoors. The physio said if the achilles isn’t better in another 2 months, go back. It’s been about a month since that appointment and it’s no better. Even if it does get better there is always a high risk of it going again. It’s all because of my stroke, my left side is so weak now doing anything makes it get injured. The achilles injury happened just from carrying a shopping bag a short distance. I’ve previously torn all the muscles in my right arm just from lifting a small object. Constant plantar fasciitis in the left foot and a whole list of other injuries because of this damn stroke. The neurophysio said the3re isn’t any more improvement to be expected and I just have to learn to live with it. I just want to be able to hike again. Having issues with my thyroid meds too.
This sucks so much, I’m sorry you’re suffering still, honey
I know it’s not much, but the fact you can walk at all is still impressive, especially given the rest of the issues you mention. I hope that the tendon will get better, and that you can walk pain free for more than five minutes. Out of curiosity, is there a way to improve your left side slowly again? Like, some way to strengthen muscles and tendons to give you back your mobility? And if so, is it affordable/available?
Nooo not the thyroid meds again ._. Is it too much or too little or something altogether different?
I’ve been having physiotherapy for several years now, and seen the neurophysio, and the podiatrist has been dealing with it too because these issues are concentrated in my feet a lot. It just isn’t going to improve any more now. It was on the NHS so it took ages to get the first appointment, by which time the damage was done, and the appointments have been spaced out far apart. Maybe if I’d gotten better help i might have made a better recovery but it’s too late now.
The thyroid issue will never go away either. It’s just impossible to keep a steady level. After the endo lowered the dose it got too low, so it was raised again, now I have symptoms from it being too high. It will never stop.
It breaks my heart to read again that it was too little too late to actually help.
I wish there was something I could do to improve all of this for you, love.Having you as a friend and being able to talk about it does help.
Good to hear you’re on the mend!
Thank you
Wow, I actually remember when you first mentioned the surgery…so reading this really made me smile. You’ve been through so much, and I love how you still manage to keep such a good spirit. That “freak of nature” line got me but honestly, it suits you. Keep surprising those doctors! I’m proud of you, and I hope you’re able to sit comfortably soon. You deserve all the healing.
I’m happy to hear my humor made you smile/laugh :) and I hope so too, comrade, thank you
Hi everyone, I’m Onandrah
I’m a proud trans woman and disabled refugee currently living in a settlement camp in . I fled Uganda after the passing of the anti-gay bill…it became too dangerous for someone like me to live freely and safely. Now, I’m doing my best to survive and hold on to hope even in very difficult conditions.
I also live with HIV, which adds another layer to my daily struggles especially with limited access to healthcare and support. Being in a space like this, where we can speak openly and support one another, means a lot.
Sometimes life feels like too much, but I’m still here. And if you’re still here too, I want you to know you’re not alone. I see you. I’m rooting for all of us.
Sending love and strength from Gorom Camp in South Sudan. Onandrah
I haven’t posted in here before but today I just needed a place to speak my peace and I hope that is alright.
I am 37 years old. I was a Chef for 15 years. My family was poor and when my father stole the savings we had for college I attended Job Corp to get my culinary degree. Seeing that they have now been defunded kind of made me think about where I am and how I was so grateful for that opportunity even if my body has fallen apart.
I have Porphyria, COPD, Heart Failure, Antiphospholipid Syndrome, Lupus, and Pulmonary Arterial Hypertension. Many of these conditions were unknown to me until my state finally expanded medicaid. Since then I have undergone alot of testing and seem to be collecting new diagnoses like Pokemon.
I had filed for Disability 2 years ago and have many conditions that should qualify me according to their own website. Instead NC has given me the run around for years, denied me twice, i filed again and have now been waiting a year with almost no contact from them despite constant calls and messaging and emails.
Last July I became homeless due to my savings running out and being unable to work. I used the last of my money on a car so that I wouldn’t be living on the street. I have been driving for Lyft to stay alive and afford my food, gas, and medicines. Constant doctor visits and hospitalizations have made it impossible to keep up with even those lately and my car is now falling apart as well. No AC with the Carolina summer coming up, a failing transmission, and god knows what else that is keeping me from passing inspection now and unable to renew my registration because of it. Even if I could afford it.
The system is literally killing me and Trump and the Republicans have made it somehow even more unforgiving. This month I even lost my food stamps as NC told me I didn’t work enough to qualify.
As i type this I sit here feeling what I think is the beginning of blood clots forming again in my lung and leg and I don’t know if I even want to go to the hospital again because I am not seeing a point.
I only keep going for my Partner, my Mother, and my little brother but I really don’t feel anything for me anymore. I am so tired and don’t see the end of this tunnel like I used to. All i see is the end of the month approaching while i am hospitalized and unable to work enough to pay for the impossible bills that have accrued from Disability constantly delaying my approval.
I see me, on the street because my car is unable to be registered, unable to work to afford my medicines, and still dying here either way.
Sorry for the downer comment but I needed somewhere to vent and I am sure many of you have seen similar struggles and I don’t want to feel so alone.
My heart goes out to you, comrade, and I hope despite everything that there’s a light at the end of your tunnel. I’m sorry it has been such a hard road for you to walk, and I can’t imagine how difficult it must have been / must be right now.
I’m tired
I’ve started falling asleep in the afternoons again, which I hate. I feel horrid and groggy. I don’t know what’s started it again, whether it’s an issue with my thyroxine or poor sleep. It’s awful being tired all the time, and people are like “What have you got to be tired about?”
“What have you got to be tired about?”
“well for one i have to field a lot of tiresome questions”
Maybe I’ll try that next time.
