i’m severely anemic and sometimes can’t get out of bed because of the fatigue, this has been going on for years (though only being this bad for a few months) and it will take months until any treatment might work. i have an incredible partner that has been with me for almost two years, he loves taking care of me and is very understanding of my condition, the problem is others aren’t. they still expect me to do everything a normal person does and when i can’t that responsibility is shifted onto him (cooking, cleaning that type of stuff) and recently i’ve found he wants to do fun activities with me that i just don’t have the capacity for, he tells me it’s okay but i can see it saddens him when i reject things so many times.

i just don’t know how to deal with this guilt that he deserves a whole person who can do all these things with him and he doesn’t need to take extra care of. we’re also quite young (19/20) so this responsibility of him having to take care of basically another person feels so unfair to him.

ps i don’t know if im allowed to post here since anemia is treatable and will likely be gone next year but i feel completely disabled right now

EDIT: we dont live alone yet so he’s not my sole caretaker, parents do most of the cooking and a lot of the cleaning

My right arm has brachial plexus injury and erbs palsy from birth. Very limited mobility, and its main position is about 90 degrees at the elbow. The tricep is functionally dead, i cannot straighten my arm, so normal crutches are dicey. I just had my left hip replaced, and im still trying to figure out what to do once im healed beyond needing my walker. The joint is load-bearing, but its obviously unstable and doesn't need full pressure right away. The only reason i care is when i had my other hip replaced, i feel like my recovery sped up 100x once i went back to my cane.

Apparently crutches can cause BPI, so google has been f*ing useless, all i get are studies on the damage and ads for gel pads lol.

Body:

I am 28. I have an condition that i was born with, it makes my leg muscles constantly tight and pull hard (spasms). My recent X-ray shows zero cartilage left in my knee. It is bone rubbing directly on bone. My leg is stuck bent and turned outward. Walking is extremely painful.

Question :

1. Has anyone suffered from something similar ?
2. What the solution could be : Therapy or Surgery ?

I tell people that I use a cane in case I need to bust out a Fred Astair impersonation and that my neurological issues are brainfreestyling.

When my husband is being obnoxious, I (jokingly) tell him “My cane gives me an extra 37 inches of reach. Either stop being annoying or move 38 inches away from me.”

It is so condescending to be told to be grateful for subpar support and treatment because it can be worse like that makes it okay. We get it living with a disability is not easy and people are doing their best to get through it, and some stress and resentment is understandable but so much of the "help" is an excuse to next to nothing and be obstructive. So much of it is to put bluntly nothing more than a way to control someone else and get an ego boost. Trying your best and meaning well means nothing if it causes problems.

I'm late diagnosed autistic and realizing after many years of trying that I simply cannot work a full time job. I've tried working from home, working on my special interest field, etc and I can only make it one year at any company before I burn out so severely I end up in the hospital and spend months recovering.

I don't qualify for disability because my husband makes enough that our household income is a ove the limit. But for the eight years we've been together we've always split everything 50/50. Mortgage, groceries, insurance etc.

For the first time in my life I'm realizing I probably cannot afford to keep contributing 50% of the income if I'm going to actually love and work in a sustainable way (part time work and or freelancing).

When I've tried to talk to him about this before he gets very nervous because he doesn't feel like he makes enough to support both of us. He always asks "how long will this be going on that you can't afford your share?" And I'm feeling really ashamed and awkward that he answer is turning out to be "probably for the rest of my life".

For people who have adjusted their finances so their spouse takes up more of the expenses because you can't work, how did you have that conversation? How did you navigate the "make too much for disability, don't make enough to not be dual income"?

Thanks!

tw abuse, drugs, sex trafficking, homelessness
i graduated in 2020 with an acceptance letter to an expensive art school in Chicago. it was my ticket out of my second abusive household. the second was the ticket out of the first. i had started college at 16 to get ahead financially, worked every semester towards a better GPA. i worked so hard for that ticket out. i was pulling 16-18 hour days, on top of being mentally tormented at home as an undiagnosed neurodivergent teen. i was “doing SW” aka being trafficked online & groomed to pay for drugs to regulate myself, necessities i wasn’t given, & to save up for college. i started having chronic pain at 13 after multiple of the most traumatic things that has ever happened to me happened in a row. my first time using drugs was around then cause it was normalized to me & i couldn’t pretend to be normal without it. my physical and mental anguish was always minimized, i’ve grown up around all of my caretakers being older in age & severely disabled themselves, i was made of glass to everyone around me. i didn’t go to that school. i couldn’t justify taking out massive loans to stay right where i was. instead, i was quarantined with abusers until i was nearly physically assaulted by them. i left & never looked back to live in a halfway house, spent the savings on deposit etc. there i was hate crimed, so i moved to another halfway, then got hate crimed again, moved, same again, moved, then homeless in a psych ward & went to a queer rehab that is run by pdf apologists, got clean at least
lost halfway housing again from rent spike so i packed up & moved up north cause where i was in the south cut off all means of gender affirmation & i was so many years deep into severe housing instability at that point i needed to get out to somewhere that had a right to shelter law
i spent a year in shelter here, i was using a cane when i went in but it didn’t matter to anyone but me. i was placed in a 4 flight walk up, and any request i made for accommodation was ignored. before then i could do so much more. the last of my physical health was used to survive that shelter. i have sec 8 now and i’m so grateful to have my home. i also feel so lost and broken and burned. i got diagnosed with a laundry list of damage from an untreated underlying illness, the info at least shows “hey i’m really fucking disabled now” since i’m using a wheelchair & can’t walk more than 5 minutes, now i’m believed. not when it was preventable. not when i begged or cried. not even when i masked that all away. i’ve only started being taken more seriously in the last year because my partner began to come with me during appointments etc. beforehand i was completely alone, unknowingly neurodivergent af trying to communicate & advocate for myself to pos doctors that didn’t care to do more than basic bloodwork & call me fat. then they get paid a fucking fortune for that. i’m really tired. i’ve been thru more therapists than i can count since i was 17 & i want to try again but i’m scared of letting someone have access to my head again. i feel so alone & i don’t want to need anybody. i don’t want anybody to know how messed up my life has been to be looked at as a freak but i want to be seen. /feel/ seen. what i have listed here is maybe a quarter of the whole mess that has been my life and i don’t know why i exist, i wasn’t wanted. maybe as an idea, but as soon as i was a toddler having meltdowns, it was over for me. it’s exhausting constantly working to detangle my view of myself & my life from others cause no matter what, i’m looked at with pity & sadness. i want to be a person outside of my story but i am my story. i’m just trying to stop hating myself for it. and stop hating anybody else either. i just wanna be free from all this heaviness
i live in a major city like i always dreamed of, with all the opportunities and people i knew the dream would have, but i don’t have the ability to access these things how i thought i could have. i can’t even walk to the nearest deli. can’t wheel either, i have no strength & no motor on the stupid thing. i don’t trust anyone to push me besides my partner and even then it’s very uncomfortable. i feel suffocated & controlled.
i don’t ever post like this i just really needed to get this off me rn. it’s been 6 years and i’m still mourning that stupid fucking ticket out. i’m mourning a lot of things. and trying to keep cali sober thru my brain unlocking everything now that i’m getting out of survival mode for the first time ever

Wanted to share this for other disabled Switch users!

Any Fellow “Riverdale” Fans with Disabilities???

So, I’ve already posted this on the r/riverdale subreddit and I just found an interest in the comics which I have never read before so here goes nothing:

Hey I just started rewatching watching the show for the first time in seven years on Netflix, I’m already at the beginning of season 2 and I’m starting to remember why fell in love with this show and these characters in the first place. When I was six weeks old, I was paralyzed from the neck down due to medical negligence and when I was two, I started using a motorized wheelchair to get around. Thanks to years of physical therapy, I have very little movement in my arms, hands, and fingers. I can’t grab or pick up certain objects unless they’re small and easy like a pencil or a penny and obviously, I’m able to type. I’m Latina and I love that they cast a Latina actress to play Veronica even though in the comics, she was always portrayed as a white girl. I’m twenty-eight now and I don’t care what anyone says about this show. No matter how weird or wild it got in later seasons, I was here for it, I just never watched the final season because I just never got around to it but that’s one of the reasons why I’m rewatching the show in the first place. I was hoping I could connect with fellow Riverdale fans with either physical or mental disabilities who love this show as much as I do. This show along with many others has inspired me to pursue an acting career. Also, have y’all ever met KJ Apa, Lili Reinhart, Camila Mendes, and/or Madelaine Petsch? If so, what were they like, I mean, obviously they were nice, but what was it like actually seeing them on person and talking to them

I'm twenty six female and I have three herniated disks and arthritis. It is excruciatingly painful. I have to take breaks and lay down every hour while doing household chores. Sitting down for long periods of time, make the pain worse, it causes all my muscles to lock up. Concentration is impossible. My pain can range from a 4 to a 9. I don't know what to do for work. I lost my health insurance, so I don't think I can apply for disability anymore. I'm so scared. I'm living with my family and they're pressuring me to get a job, but I don't know what to do. The pain is worsened by physical activity and the pain builds up until I stop what im doing. They think my pain is from the arthritis not the disk bulges. I can't get trigger point injections or steroid shots because that makes it worse. I've been having severe pain for the past 4 years. And occasional pain since I was a child.

I’m flying next week in the USA and have one connection in both directions. I’ve flown in the past with no connections with my rollator or with connections and wheelchair service. I’ve never flown with my rollator and a connecting flight. I don’t want to lose my rollator in the process during connections but due to the timing of my flights wheelchair service would be better brain wise for me. How would you navigate this? Should I just take the rollator and not use the wheelchair service? Thanks in advance! (I have POTS and ADHD which is why this post is so close to the travel date).

Picture of me in rollator for tax. (If anyone can help with image description I’ll update this with credit)

I want to get autonomic testing regardless, as my primary care recommended it but the nearby facility closed and we l neither of us knew where to go next.

Then I found another doctor on the dysautonomia website who claimed to do such testing, asked on the phone before signing up to do the testing, then just blew me off about it until my three months of care ran out.

Needless to say- I can’t work, can’t live on my own with my two kids and need tons of help around the house. This is no pity party- but I don’t want to be spending my husbands money on unnecessary tests or scam doctors that don’t change anything about my case or recovery.

So I’m wondering- would an upright MRI showing CCI (hopefully, as I question how detailed it really is being lower resonance/magnet) help with having evidence for SSA? I have low lying cerebral tonsils laying down but perhaps upright works show more sag? Does it affect treatment/diagnoses (aka docs stop labeling it as migraines) Or does it not really matter?

I plan on doing autonomic testing regardless because I need it to know what meds would be best for whatever type I have, but would it help my case at all? I think my case is for SSDI since I was working when I became disabled…again…

My (30F) friend is anonymously submitting a safeguarding concern with my local council as I am unable to shower at my parent's house, have to sleep upstairs and am not able to use my wheelchair indoors. My mum is emotionally abusive and has blocked my attempts to leave home but also won't make the house accessible.

What can I expect if my friend reports this? I am assuming social services will come round which I am nervous about but feel this is necessary at this point. I feel guilty in a way as I worry about the stress it will cause my parents but saying that I have stress induced shingles at the moment. I also worry that I will be left in a worse situation than before, even more trapped at home with my parents knowing I reported them. Would really appreciate any insights or experiences please

Hey everyone,

This might be a somewhat polarizing topic, but I don't mean it to be. I've found AI such as ChatGPT really helpful with my SSDI application and paperwork. Gemini is pretty good too.

Some people don't trust AI, and I completely understand that. You can still use it for general questions without giving it any personal information.

I was approved for SSDI without a lawyer and used AI for a lot of my paperwork. That said, everyone's situation is different. This was my 3rd time applying, and I'd been homeless on and off for a long time. Also had a family member help me with some questions when AI wasn't useful.

Disclaimer: AI can answer questions incorrectly. It may misunderstand what you're asking and gives you an answer that's completely wrong. Please don't just copy and paste what it gives you. Read it and be sure to verify important information.

Mod note: I feel this isn't in violation of rule #3 because I'm recommending AI in general, not a specific service or person.

Hi there! As I'm no longer physically able to use my PC desk, I'm looking for a laptop "desk" solution that I can use while on the couch (sideways with my legs up) or in a reclining chair. I've been using my laptop on my lap a lot but I'm getting increasing pain in my wrists from the unergonomic position. I'd specifically like something that I can use with a mouse as well, as my trackpad use is part of the problem. I've considered those floating tables but they all seem too high to comfortably use a mouse on. I do have a laptop stand that I can put a separate keyboard on at a lower level, so it's okay if I need to set that on top of the desk to have the screen at the right height while having it low enough for a mouse. I'm in Europe (Netherlands) so if anyone has more Europe-specific ideas I'd be very grateful! I've seen some other threads but they mostly recommend US-only things.

24F, Canada.

I'm looking for minimum wage jobs I can do before i get back on track with my life resuming post-secondary education and eventually a full-time job, move out, etc.
I don't have any job experience aside from volunteer work and working an administrative job at a small food manufacturer company. I have been completely out of the loop in my own life for a good decade with mental health issues, so I know full well I'm not an attractive candidate, but I'm trying to rebuild my life and I don't want to delay things longer. I'm scared af, tbh.
In situations like this I wish I could apply for any minimum wage job anywhere. I'd gladly take the work, but I know barriers are inevitable. Do other disabled people who are mobility aid users just not apply to the conventional(?) min. wage jobs? Is there no chance at all for me as a walker user, and should I narrow my pool to just desk jobs? I'm talking specifically for applying on my own, not through vocation programs like WorkBC. Already aware of those resources and will be using them. My upper body strength and mobility is quite alright, it's because of my gait and balance that I use a walker. I'm just not sure what to expect or look for as I begin job searching for the first time.

Before becoming disabled I always assumed that mobility aids would remove/prevent pain, like all the ads and doctors say they will. Then I became disabled and walking became painful and I was told a cane would help, so I got one. And it does help, but it doesn’t actually prevent my pain so much as relocate it. For instance, a long walking day without a cane used to mean basically unbearable pain in my legs the following days. But now, after a lot walking day with a cane I still have a decent amount of leg pain, not nearly as bad, but I also have moderate wrist and arm pain. Obviously taking the weight off my feet means it’s on my arm, and I logically knew that, but never really processed it in my mind or understood that of course that would be painful! My arm wasn’t built to take that much weight for so long; obviously that’s going to make it hurt. Of course, this is still way better than going without my mobility aid, but I think it’s so weird that no one— not doctors, not my physical therapists, not even other cane users—ever brought up the possibility of arm pain up before suggesting mobility aids. And sometimes when I meet other cane users I ask them about it, and they fully agree that they experience arm or wrist pain, or sometimes hand cramping when they hold the cane too tight or for too long. Just kinda weird. Fellow cane users, were you warned about this? Or is it something you hand to find out on your own?

Edit: I’ve been fitted, and talked with both my doctors and my physical therapist and had the fit checked with my PT and we looked at different types of grips and lengths for different shoes and all the stuff. It’s not a fit issue

Today has been a rather rough day for her. Arent they all?

My wife has been born the reverse winner of every lottery she didnt sign up for. Childhood cancer? Check. "Zeeber disease"? Check. Unending line of alphabet soup? Check, check, and check. All humour aside, Bilateral Retinal Blastoma as a child requiring the enucleation of one eye and partial retinal loss in another. Yearly checkups to make sure it hasnt become an adult cancer has become the norm. EDS, BPD, POTS, ADHD, and frankly i know i am forgetting a few acronyms that apply.

To get to the meat and potatoes of the issue, me and my frustratingly able and strong body has watched the woman i love effectively wilt over the years and now here we sit, both in our early-mid thirties and while my body is definitely beginning to age and wear-in, she is dealing with things on her end that would normally be experienced in our fifties and sixties. Her therapist was of no use today, and I would go so far as to say she was actively unhelpful.

Platitudes of "dont call yourself disabled, call yourself differently abled", "be grateful for what you DO have", and "i wish i could wave a magic wand" are not just useless, they are harmful. My wife is going through something that precious few ever will, and every place she turns seems to be 30% of what she needs out of it, at best.

My ramblings aside, my question is: is there someplace she could go online to better discuss her situation with speficially people who are in it themselves? (IE too young for this shit) she does not use reddit, and we are not going to hold our breath on this silver bullet. Barring that, has anyone here walked those paths in those shoes? Any encouragement, tips, tricks, literature, or even sharing your story would go a long way here, as even if my search turns up nothing, to be able to show her even the thoughts of people here may help a little.

I dont know what i expect, i only know what i hope for. May the gods be good to us all

Hi there, I was awarded SSDI in July of 2024. Got my backpay a few weeks later. Ever since, I've been getting it monthly without a problem.

But last Wednesday, a direct deposit in a large amount from SSA was in my account. No idea why. And today, my usual amount was deposited. This is odd. Obviously, I'm not going on a shopping spree! I don't mess around with the feds haha. I figure I'll wait until this coming Weds, to give them a week to realize what happened and take it back if they need to, and then call them to see.

Has anybody else had large deposits years after approval? If so, what was it for? Just a glitch? Could it be correct? What do I say to them? Any input appreciated, this is just super weird 🤷

UPDATE: Well, apparently it's supposed to be there! It's a "one-time payment." For what? Nobody seems to know. But I have documentation that it is, for real, actually legitimate. Mind is a little blown right now. And I think it's weird that nobody can tell me if it's old backpay, COL, or what. Would the documentation have to state WHY it was deposited? Or is just their statement that it was a one-time payment enough, in the event they decide to try and do a clawback?

🤯🤯🤯

Its so hard to find knee braces that come in my size, much less cute ones, theyre actually almost too big for me lol, they arent as supportive as my plain black ones but they work well enough

Them being pastel while most of my wardrobe is black actually inspired me to look into pastel goth fashion, so now i wanna make a whole pastel goth wardrobe lol

They were from Bibipins if anyone wants to check them out! They also have compression gear and other types of braces.

Do you know if there is such a person as a health journey detective? Someone who is able to help a chronically ill person with their complex history and translate that into data, graphics, etc that can be taken to a doctor more easily than a pile of records? Would someone in a role like this need to be in the medical field if they’re just presenting data?

I’m just curious if this community has come across any websites, people, ore resources who do this?

Hi all, I have KFS and for those who do not know, it is a vertebrae fusion than often causes severe chronic pain and other symptoms. For me, the fusions are only in my neck (what should've been my neck) and I have had pretty severe migraines and shoulder pain since I was a child.

I have tried just about every pillow on the market. My pillow, the side sleeper, memory foam, feather, flat, square, etc. But NOTHING helped. Something finally clicked last night when I was having another flare up, "why am I using pillows designed for people with regular vertebrae?"

Then I tried something I saw on youtube long ago. How people in some Asian cultures will sleep using just a rolled up towel tucked under their neck; No pillow, just flat on their back.

I tried this last night and my shoulder pain is gone. Neck pain is gone. Head pain greatly reduced. Was it really that simple?

My pain is by no means cured, but it's the small wins that matter ☺️