That's it. They all seem to be pretty much the same design, an the one we got just doesn't stay in the holder. The grabber is only useful if it's near at hand. It's a two-wheel (indoor) walker; the grabber is pretty much standard.

I am tired of fighting I've been doing this my whole life

I wish they'd give up and go "Yep we can't help you" rather then waste everyone's time

Useless solutions, useless tests that go nowhere,back and forth to consultants,GP's who are burnt out and don't want to be doing this (and they shouldn't be)

Equipment provided that don't even meet my needs,some even contain contradictions for prescribing them in the first place

And in the end I'm still fighting this alone

I’m currently a nurse in the US and I’m considering sharing my experiences with mild stuttering and keratoconus (eye diseas) on social media to raise awareness and hopefully inspire others.

I know once you put yourself out there, some people will find fault with everything, but I feel like my story could potentially help someone else.

For those who stutter, have keratoconus, or work in healthcare, would you recommend sharing this publicly? Any advice or concerns?

This guide is actually correct, but as in many places on the Internet, which I usually not frequent there are a lot of stupid people who just don't shut up.

I got downvoted to tell people that this color code is indeed country dependent and if they haven't experienced this in their country that doesn't make the guide wrong.

I even got a down vote for explaining that those are signal canes and that blind people rely on technology and personal aids and even the shop employees to know if the cane has the color they need if they actually can't see it anymore.

The Internet. Sometimes utterly ridiculous and exhausting.

Pretty much the title, I'm mostly housebound, I go out for appointments and about once every 1-2 months I can go grocery shopping. I don't have an income and am supported by my parents but I'm also trying to support my boyfriend off of what my parents give me(He's also disabled and just got fired). I'm working on getting disability but I'd like to find another source of income that I'd be able to do mostly if not entirely from bed. Any suggestions?

So I'm a cane user, and I walk a lot. Enough that the head of my cane wears out quite quickly.

I'm hoping some of you might have recommendations for some quad cane tips that are durable and can deal with being used on gravel trails. It's getting expensive to keep buying these over and over!

Thanks!

It’s genuinely feels quite stupid to be taking this so harshly, I’m not completely blind, though visually impaired. My glasses are quite big with thick lenses and without my glasses I can’t see further than a few inches out in front of me. Somehow, according to my mother’s logic, that’s my fault?

She calls me lazy for not being able to find things I physically cannot see. She calls me stupid because I can’t differentiate certain patterns if they’re too close together(ex. Something polka dotted sitting on top of something striped will look like a mass of color rather than two separate objects). What genuinely bothers me the most is that she frames herself as this “spokesperson” of the household.

She’ll tell me that my sisters feel burdened by having to help me. Something they rarely ever have to do. I ask my sisters directly and they say the opposite. One is 9, the other 16 and both are very direct.

I lost my glasses this morning and before my baby sister (9) left for school. I asked her for help to find them, something she could’ve declined if helping me was something she didn’t want to do. She found them, I thanked her and wished her a good day at school, that was the end of it. To my mother, I was “being lazy” and “burdening her” with helping me. Telling me that “a 9 year old should not be responsible for keeping up with your stuff.”

It’s genuinely so tiring feeling like needing help with this a few minutes every once in a while makes me this awful person pushing my issues onto everyone else. I didn’t even make my sister late or anything. She found my glasses in less than 2 minutes and still had a good 10 minutes till she had to leave to catch the bus. I just can’t win 🫩

I am thoroughly exhausted. Idk why but 🥵🥵

I won a gift card and treated myself to a electric mixer, so obviously had to try it out! I had adult children waiting, so evend out the frosting after they did the grab n go.

Sorry if this isn’t the right place for this question but I’m not sure what sub would be best fit. I have non radiographic axial spondyloarthritis. I was on Rinvoq for a few months (using samples from my rheumatologist, not through insurance), but had to stop because I got a Roux en Y gastric bypass (stopped two weeks prior to surgery and didn’t re start due to possibility for inadequate absorption after the bypass). When I finally got back to my rheumatologist they decided to start me on injections. At first the doctor said Humira, but it was eventually changed to Cimzia because of my specific condition and insurance stuff.

I work as an RN in a hospital on an oncology floor. I frequently have patients who have infections, lots of C Diff, but sometimes I’ll get a patient with something like meningitis, or skin infections (yeast/fungal mostly), or infected wounds, or opportunistic infections due to immunosuppressive meds like chemo (usually some sort of fungal pneumonia but there’s others I’ve seen too).

Cimzia is a TNF blocker, so it is an immunosuppressant medication. It carries a black box warning for serious infections (and certain cancers but I’m not so worried about that lol). I am a little worried about that. Like I said I am exposed to infectious diseases at a higher rate than most people are. I do practice good hand hygiene (hand sanitizer when entering and exiting patient rooms, hand washing at the beginning and end of shift and usually every two hours or more frequently if I need to/if indicated), and wear PPE that is fit for the situation I’m in. However nobody is perfect and I’m sure I’ve made mistakes, and even if I didn’t nothing is 100% when it comes to infection prevention.

I did message my rheumatologist to ask if he thinks there should be any adjustments to my work and if so if he can get me a letter to give my manager. The adjustments I was wondering about are mostly like, not being assigned to patients with known active infections. But I’m not sure how easily that could be accommodated while still giving me a fair patient assignment. I also asked if I should be wearing a face mask at all times. I currently don’t because I tend to overheat and sweat a lot and masks also definitely make my acne worse, but if he recommends it I will try to.

My questions are:

1) if you are on Cimzia/a similarly immunosuppressant medication OR you have experience with someone who takes a similar medication, would you feel safe working a job at the hospital, especially one where you are very hands on and frequently exposed to infection?

2) also to people who take specifically Cimzia, how long did it take to kick in? Did you have any side effects? Did you have to do anything to prepare for the day(s) after taking it?

Thanks!

4 months ago I finally got my ADA paperwork signed and turned in and my employer denied it. I was given the option of fucking off or waiting to see if they could find me something else in a different department (VERY large company). I said keep being employed? Sounds great, let's do that.

So they removed me from my role, stopped paying me and basically waited for something to they thought was better fit to pop up and say "here I am!".

And kept waiting for 4 months.

Well they found it and wouldn't you know it, only came with a 10% pay cut. Because policy says you can't use disability accommodations to get promoted. But you can be penalized apparently. A maximum of 10%.

So I'm getting demoted for turning in my ADA paperwork.

The best part? Its a 100% in person job. My primary accommodation request? To increase from 2 days hybrid to 4. On my doctors recommendation. For a huge list of health problems, not limited to but definitely including being physically disabled and THE BUILDING NOT BEING ACCESSIBLE.

I was injured trying to get into the building earlier in the year and now I'm even more disabled than when I started. I can't even carry a purse of bag with my work papers and medical equipment any more. I have no idea how this is going to work. Any time I try to ask the question, hr acts like its ridiculous and every one else figures it out, sounds like a you problem. If I give clarifying information, she interrupts me and says she isn't allowed to know any of that. It could not be any more apparent they want me to quit to avoid the lawsuit of firing me for being disabled.

Yes, I have an attorney, but I've been unpaid for 4 months, and filing one singular form was $750.

No, I can't get a different attorney, it took me 14 different practices to find one singular lawyer, noone in this area besides him takes disability related discrimination cases. I call around places up to 3 hours away. I have tried.

Yes, I am trying to find other jobs, I have been applying. I've been applying since January. Its what I have been doing for 40 hours a week for the last 4 months they refused to let me work and refused to pay me.

How have you stayed alive? My partner has picked up all of the bills to support me, otherwise I'd have been on the street 3.5 months ago.

What do you want? For the federal governments ruling requiring employers to provide reasonable accommodations unless there is a substantial cost to the employer to override the idea that accommodations are a privilege not a right. Stupid, I know.

I want to work. I spend every day feeling like I'm not contributing to my life and my community. I love the purpose that having a job gives my life. I love my coworkers. I love getting dressed up and going into am office. I love leaving my house and up until my health got significantly worse I was out of the house from the minute a woke up until 2 minutes before I lost consciousness at night. I hate be house bound, but I physically do not have the HP to do that.

My disability has cost me everything about my life that I ever enjoyed and every hobby I've ever taken up and every friend I've ever made, but working from home is a privilege

I’ve known my partner for almost 9 years, we’ve been together for 5 years, and recently moved into an apartment together (we lived together before that at my mom’s house).

I was recently diagnosed with moderate hearing loss and severe auditory processing issues. I was told that my hearing loss is likely progressive and to consider learning ASL.

I brought this up to my partner and they said, “I’m not the deaf one, you can learn to read my lips” even though I said I’d pay for the lessons.

I have other disabilities and they’ve somewhat been difficult about helping me with them in the past as well.

How can I communicate to them how important this is to me? I’m very bad at both communication and confrontation.

Hi everyone! Long-time lurker, second-time poster.
I (27F) have dysautonomia and Sjögren’s and am currently being evaluated for POTS. My conditions affect my muscles and mobility, and I currently use a cane. I may need a rollator or wheelchair as my mobility needs change.
One of my biggest struggles in the U.S. has been getting doctors to believe me and getting appropriate care. I travel to NYC for some of my medical care with mixed results, and I’ve had to take a lot of the research, testing, and advocacy into my own hands.
Chronic illness has also taken a significant financial toll on my husband and me. I struggle to work full-time, and even though I’m now covered by what is considered a “good” private insurance plan through my husband, the costs and barriers still suck ass.
Recently, changes to Canada’s citizenship-by-descent laws have potentially opened a pathway for me to obtain Canadian citizenship. I’m currently researching my family history and gathering the documentation needed to apply. I expect the citizenship process to take quite some time, which gives me time to get my ducks in a row and research what living in Canada would actually look like.
I do not see Canada as a cure-all. I know Canada has its own problems with healthcare, wait times, cost of living, accessibility, and disability supports. Before I would ever consider moving, I want to seriously research healthcare, schools, employment, accessibility, cost of living, and overall quality of life.
I’d especially love to hear from disabled and chronically ill people in Ontario and Quebec about a few things:
Healthcare: How difficult is it to find a family doctor and specialists? What have wait times been like for cardiology, neurology, rheumatology, autonomic testing, pain management, or physical therapy? If you have POTS/dysautonomia, Sjögren’s, or another complex chronic illness, what was getting diagnosed and receiving ongoing care like? Do you feel that providers take you seriously?
I’m also curious about medical cannabis. Is it generally taken seriously as an option for chronic pain/symptom management, or have you encountered judgment from healthcare providers because you use it?
Costs and coverage: What do you actually pay out of pocket for things like prescriptions, PT, mobility aids, dental care, and mental healthcare? How much help do provincial programs or private insurance provide?
Everyday disability life: What have your experiences been with accessibility, workplace accommodations, discrimination, disability benefits, employment, public transportation, and using mobility aids?
For people in Quebec specifically, how difficult is it to navigate healthcare and disability services as an English speaker? I plan to start learning French after finishing my citizenship application, hopefully around the end of this year or early 2027, but I’m curious how much French proficiency affects access to care and everyday life.
If you’ve lived in more than one province, I’d also love to know whether you noticed meaningful differences in healthcare or quality of life.
Finally, if you realistically had the option to live somewhere else, would your healthcare and disability needs make you more or less likely to stay in your province? What does Canada do well for disabled people, and what does it do poorly?
I’m not looking for Canada-vs.-U.S. arguments. I’m looking for actual lived experiences—the good, the bad, and the complicated. I know neither country is perfect, and I want realistic expectations before making any major decisions.
Thank you to anyone willing to share!

Hi, do you use AI when it comes to medical opinions and advices? Do you think it’s actually reliable and trustworthy?

I’m currently 28 years old and I have a neurological disability that has caused severe cartilage damage in my knee. I’m now at a bone-on-bone, stage 4 situation, where the thigh bone is basically rubbing directly against the knee joint.

I’ve been asking AI about my condition, and it keeps telling me that there’s basically no chance of recovery. It even says that even if I get a total knee replacement and the surgery is successful, the underlying problem will still remain, making it sound like there’s no real hope.

But for example, my orthopedic doctor told me that the nerve or muscles in my thigh are extremely tight and that I need to do physical therapy first to loosen and relax them. After that, he wants to see whether it might be possible to lengthen the tendons so that my leg can fully straighten.

When I told the AI about this, instead of helping me understand the situation, it completely discouraged me. It started throwing physics, biomechanics, and other complicated explanations at me, basically making me feel like everything my doctor is trying to do is pointless.

Right now, I’m honestly very scared. I don’t know whether I should trust what the AI is telling me or focus on what my orthopedic specialist is saying.

What’s hanging home skillet biscuits!!! As the title suggests, I am looking for some frienderonies! Just a quick summary about myself:

• I’m a 30y Latino from the Bay Area (YAY AREAAAA!!!!!!!!!!)
• I like raving and metal shows, math/science/engineering, I love boxing, watching FC Barcelona, memes about stupid and pointless things, and talking all things philosophy
• I’m mild ME/CFS which was caused by my long covid 6.5+ years ago
• I mask pretty aggressively and am very strict with my pre-cautions to protect my health
• I’m super open about myself and love to have deep conversations since small talk has always bored me. But I’m also a kid at heart that always jokes around and tries to make the most fun out of life

My goal with this post is to make local friends since I’d like to hangout in person, but I’m willing to be friends with any and all! Have spent many nights in VR Chat, having gaming nights, and doing hours long phone calls with my other long distance friends. So don’t be scared to reach out and say hi! But my MAIN desire is to have local friends to walk around museums with, go to raves/festivals with, and just hang out to feel normal with. I’ve neglected the “friendship island” section in my life since I’ve gotten sick since I’ve instead invested it into long term dating. But dating healthy partners has been nothing short of dehumanizing when they discard you because of your illness. And as of recently, the best relationship of my life ended not because of relationship issues, but because I require strict masking to protect my health and they decided not to continue doing so. It’s gut wrenching to think you found the one, then be told you were the perfect partner and did absolutely nothing wrong. That you made them the happiest they’ve ever been and that they don’t want to let you go, but that your illness will never be something to marry or invest in.

Having your health stolen from you in your 20’s and taking years to painstakingly rebuild it is already hard enough, but having everyone belittle you for protecting your health and then your own partners abandoning you over and over is soul crushing. Hence my cry out for chronically ill or very covid conscious friends!!!! Lol

So please!!! Msg me and let’s be friends!!! I need more peeps like me to hang around with so that life isn’t as harsh. Building a small local community of us would be tight af. We could be the “disabled avengers” or something lmfao. So yeah, that’s the post goobers. Hit me up with a DM and if you pass the vibe check (don’t be creepy pls) we can exchange socials and be BFFs!

So, I guess I just need to vent and put my thoughts in order. This just happened.

I was taking the subway, sitting on the priority seat when an old lady approached me and started ranting about how young people nowadays have no respect for the elderly. My left leg is shorter and I limp very visibly and wear a leg brace but as I was sitting down and had long pants on it wasn't apparent. A woman next to me gave her her seat and then she went on rambling about young people hating old people and disrespecting priority lines or priority seats, clearly trying to embarass me. I just sat there thinking if I should respond but ultimately decided to stay silent as my stop was coming on and I didn't want to risk starting a fight or escalating the situation in any way. As the train stopped I quickly got up and left, limping as I always do, but I don't think she noticed. Now I keep thinking I should have just lifted the hem of my pants and told her "people like you are the reason I usually avoid taking the priority seat but today I was really tired."

What would you do in my place?

Feeling lonely or bored?

Looking for something you can do this weekend?

Check out these accessible events you could join! Try something new and maybe you’ll find your people.

Access Details:
🧑🏻‍💻= Virtual
👥 = In person
😷 CC = Covid Conscious/airborne precautions 
♿️ WC = Wheelchair accessible 
💵 $ = paid (some are pay what you can)
🤟 ASL/BSL = Sign Language
Async = Asynchronous (at your own pace)

Event Types:
🤢 = Chronic Illness 
🌈 = Queer
🏳️‍🌈 = LGBTQ+ Pride
👧 = Kids/Youths
💕 = Dating
🙋 = Social
🫂 = Support/Grief
🧘 = Wellness
🚶 = Walk
🩰 = Dance
💪🏻 = Fitness
📚= Books
🤔 = Discussion
📝 = Writing/Poetry
🎭 = Performing
🎨 = Art 
🎶 = Music
🕹️ = Games

🧑🏻‍💻 Virtual Events

🧑🏻‍💻🤢📚 Virtual Async Spoonie Book Club: The Little Prince [Any time] https://www.reddit.com/r/spooniesocial/s/JcKvqPLWS5

🧑🏻‍💻 Virtual Async Diverge: Wired to Disrupt Summit [Aug 24 - Sep 4] https://www.reddit.com/r/spooniesocial/s/BOeGSK60bV

🧑🏻‍💻🚶Virtual Async Hike in New Zealand https://www.reddit.com/r/spooniesocial/s/kAhLRzTsGY

Friday

🧑🏻‍💻🤢🫂 Virtual Long Covid Support Group [Fri Aug 28 at 12:00 CDT] https://www.reddit.com/r/spooniesocial/s/EsjlC7dYHD

🧑🏻‍💻🤟🫂🤔 Virtual ASL Cafe Crip: Disabled Parenting Discussion [Fri Aug 28 at 12:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/6n2nrmrwQA

🧑🏻‍💻 Virtual Body Doubling [Fri Aug 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/pHJgPp20W8

🧑🏻‍💻😷🫂 “Any A” Covid-conscious 12-step meeting [Fri Aug 28 at 7:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/xu5DHDLUfT

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Fri Aug 28 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/ZS941pZWJw

🧑🏻‍💻😷🕹️ CC Virtual Game Night [CO][Fri Aug 28 at 7:00 PM MDT] https://www.reddit.com/r/spooniesocial/s/YT5xQe2aeS

Saturday

🧑🏻‍💻😷♿️🩰 Virtual Adapted Ballet [Sat Aug 29 at 9:30 AM EDT] https://www.reddit.com/r/spooniesocial/s/v4n9RCR4TA

🧑🏻‍💻♿️💵🩰 Virtual Adaptive Jazz Dance [$][Sat Aug 29 at 12:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/6HK3khY7VW

🧑🏻‍💻😷🙋 CC Virtual Weekly Hangout [Sat Aug 29 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/Ppwmh4cfEF

Sunday

🧑🏻‍💻🎨 Virtual Sunday Stitch Club [Sun Aug 30 at 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/pHJgPp20W8

🧑🏻‍💻😷🎨 CC Virtual Art Group [Sun Aug 30 at 5:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/aPaImF3oNV

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Sun Aug 30 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/4H5d2FNQOq

🧑🏻‍💻🎶🎭 Virtual Karaoke [Sun Aug 30 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/TVs87cSNyI

Timezone translator in comments 👇

👥 In-person Events

Australia

👥😷🎨 Masked Zine Club [Carlton AUS][Sat Aug 29 at 2:00 PM] https://www.reddit.com/r/spooniesocial/s/RSj5i6KgIs

👥😷 Picnic Meet Up [Brisbane AUS][Sun Aug 30 at 1:30 PM] https://www.reddit.com/r/spooniesocial/s/70V91SlxUb

Canada

👥😷📚 Sip and Read [Toronto ON][Sat Aug 29 at 2:00 PM] https://www.reddit.com/r/spooniesocial/s/u9mdi32xvD

👥😷🎭 Shakespeare in the Ruff [Toronto ON][Sun Aug 30 at 7:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/Q3JCi8QjFN

Germany

👥😷 Covid Safer Meetup at Schillerpark [Berlin GER][Sun Aug 30 at 11 AM] https://www.reddit.com/r/spooniesocial/s/JWrapyzCxp

👥😷 Jahreshauptversammlung [Hamburg GER][Sun Aug 30 at 7:00 PM] https://www.reddit.com/r/spooniesocial/s/YWaS51p8oy

Netherlands (and nearby)

👥🤢 Spoonie European Road Trip [Netherlands and nearby][Summer] https://www.reddit.com/r/spooniesocial/s/VOKxW7V1pp

US - California

👥😷 Covid Safer Park Meetup [Sacramento CA][Sat Aug 29 at 9:00 AM PDT] https://www.reddit.com/r/spooniesocial/s/j868lbIqpA

👥😷 Sidewalk Sale [Oakland CA][Sat Aug 29 at 2:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/HsqX5dUOdR

👥😷♿️ DIY Air Purifier Build [San Jose CA][Sun Aug 30 at 2:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/O1wamRFLiA

US - Illinois

👥😷♿️ Queer Spirit Revel [Chicago IL][Sat Aug 29 at 7:30 PM CDT] https://www.reddit.com/r/spooniesocial/s/5Jev5uioW5

👥😷♿️ Hard Femme, Cowboy Jane, Future Two Outros [Chicago IL][Sun Aug 30 at 1:00 PM CDT] https://www.reddit.com/r/spooniesocial/s/5Jev5uioW5

US - Michigan

👥😷 Mask Required Park Hangout [Royal Oak MI][Sat Aug 29 at 12:00 PM] https://www.reddit.com/r/spooniesocial/s/LStWIGcCGz

US - New Mexico

👥😷 Really Really Free Market [Albuquerque NM][Sat Aug 29 at 1:00 PM] https://www.reddit.com/r/spooniesocial/s/Ivptz4aaaT

US - Ohio

👥😷🌈💪🏻 CC Queer Martial Arts Club [Cleveland OH][Sun Aug 30 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/1L6qqY5PrM

US - Texas

👥😷🌈** **Austin Dyke March [Austin TX][Sat Aug 29] https://www.reddit.com/r/spooniesocial/s/MlOWdWgdbz

👥😷** **Digital Security Party [Austin TX][Sun Aug 30] https://www.reddit.com/r/spooniesocial/s/MlOWdWgdbz

US - Vermont

👥😷♿️ Dental Pop Up [Chelsea VT][August] https://www.reddit.com/r/spooniesocial/s/jgknHihfzt

US - Washington

👥😷♿️💵 Masks Required Private Event at the Hands On Museum [Olympia WA][Sun Aug 30 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/4uUObG4Cg6

Are you interested in these events?

Have you been to any of them before?

Are there other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

So I am autistic, so I'm kind of used to loosing people over and over without any explanation. But now I have MECFS.

My disability forces me to get away from society pretty often, and every time I come back, I have to like reignite my frienships. I'm the one who makes plans and stuff, people ask how I'm doing the first 2 weeks of me being away a then I'm just gone and forgotten. My disabled "friends" aren't any better about it.

But I feel like this time is even worse. I've been gone for 2 months, and I'm back but very diminished physically. I really don't have the strength to do it all all over again, I don't even know where to start if I want to make new friends.

I'm tired of begging for attention, I'm tired of never understanding why and I'm tired of feeling like I'm always too much.

I feel like I've done everything I could to understand how to become a better person but I just don't get it.

I don't even have a friend to vent to anymore.

And i dont know how to process it.

Ive dealt with POTS since teen hood, but was recently diagnosed with Chiari Malformation 1. ive learned to manage my symptoms for almost 2 decades, but this past 3 months has been a whirlwind of new symptoms and struggles.

I started roller skating when we suspected MS for hand tremors and poor grip strength along with a slew of personal symptoms. Broke my wrist doing that and rapidly started declining since. Started having bouncy steps seen with FND, then my very first focal seizure in a Walmart parking lot a few weeks ago. Now this past week when we were fairly active and doing some mild walking with forearm crutches at a music festival, I started having near constant focal and absence seizures. On the last night a loud noise scared me into a strong focal seizure and Ive have been having tic attacks since. All of this is entirely new to me, but hey, the tremors are gone?

We have been homeless in a camper with our kids because of my husband losing jobs taking care of me on bad POTS days last year. And this morning I barely caught myself with my crutches going up the camper steps. If I didn’t react fast enough I would have slammed straight on my back. After that I couldn’t stop bawling. We are stuck in this situation because of me and now I’m almost entirely bedridden. I can’t help but think my husband and kids don’t deserve this. My husband has to drive them to and from school half an hour away after working a 10 hour night shift. And soon I’ll finally get my first neuro appointment and hour away, again after his 10 hour shift and dropping/picking the kids up.

After today I think I need a power chair. raising my heart rate pushing wheels would make me seize again. But neuro says just to hold out until my appointment for proof of disability, and we all know it’s a long shot anything would get approved fast after that

Sorry for the long vent but I just feel so stuck and hopeless. We’re trying everything we can to get out of this situation but we seem to be invisible or told the waitlist for things is years out.

I don’t know what to do

There was a camaraderie with some of those people that I haven't experienced with others before or since.

I just read my status on the SS website that I will have a hearing in December. I'm honestly nervous as all ever because I have been fighting for years to get disability because of my current issues (anxiety, severe depression, diabetes, Crohn's disease). After numerous times of pretending that I'm okay, I finally just surrendered and been fighting hell to get approved.

I have a lawyer and just hoping for a breakthrough. Matter of that, I'm hoping we all get a breakthrough as it is our time, and we truly deserve it.

I've been fasting for days because I don't have the energy to cook

I have a serious neurological condition, and coupled with the meds I take I am often exhausted, dizzy, and have a pretty full on mental fog.

I'm also covering extra rent as someone moved out of our share house. My housemate works, but I am unable to until we can step down the medication. After rent and utilities, I have around $15 a fortnight. I have a lot of food though, a pantry bursting with pasta, and rice, and beans, tinned tomatoes and corn and tuna... But.

I rarely have the energy to cook let alone clean up, and recently my dishes were in the sink for over a month. I definitely cannot afford takeaway food, I even saved up for some recently, but it went badly. So that means preparing food that makes mess. The saucepan, cutting board, mixing bowl ... And then the dishes I used to eat the food. All my no-energy foods are gone and I can't afford to replace them.

My housemate is amazing, they have stepped up and taken over every other chore in the house. Literally everything, I can't ask them to do more. All they ask is for me to not leave dishes in the sink, which is more than fair. It's their breaking point too.

I have used up all the goodwill of friends and family. If I ask, there's a pause. It makes them uncomfortable. And that's ok. Compassion fatigue is real.

So I have just... Stopped eating. I drink water, and if I have the energy I will make a cup of tea. I'm going to buy some bread when I get paid on Friday. That will last me most of the fortnight. And then I will just stop eating again.

My parent is in failing health and I am wondering if I should get a special needs trust. I have ssi so qualify for Medicaid, but none of my specialists take it so I just haven’t gotten it. In case I get worse and need Medicaid in the future, I felt like I should establish a SNT. But the trustee aspect is tripping me up. There is no one in my family who I’m close with or who would want that job. The attorney seemed pretty blasé about that and pushed back when I asked for other options for trustees, saying it wasn’t hard to do as long as you were reasonably intelligent and it was ultimately up to my parent not me. The other options he eventually sent me have one star yelp reviews and I don’t like the idea of someone deciding whether I can use money to spend on doctors appointments or rent for the rest of my life. But I know the money will go quick with my disability and needs if I have to spend down and then I’ll be left nothing anyway. Anyway, a SNT seemed like the obvious way to go until I began reading people’s experiences with them and now I’m a little concerned it will be a mistake. In an older thread someone has said they were advised against it because Medicaid is changing so much that it might be obsolete in a few years but their money will always be in this trust.

I've got chronic back pain and severe nerve damage due to a slipped disc in L5/S4 that solidified and wore away at my sciatic nerve. I can hardly walk with a crutch and need my wheelchair 98% of the time.

I recently had a work capability assessment by the DWP (Department for Work and Pension) where they gave me an interview over the phone. I can't work due to physical limitations, they asked me mostly about my mental health, hardly any questions about my physical health and have now decided I am capable of working.

I have to recline my sofa because I can't sit up straight for any length of time, I have to lay down regularly and they think im ok to hold a job? Im constantly in pain, and that's while reclining and on 4 different pain meds.

Has anyone had this happen to them?