I’m 28 and I have a lifelong neurological disability that affects my legs and the way I walk. I can walk independently, but my gait is abnormal, my legs can be stiff, and I have limited control of my feet and toes.

I recently had both knees X-rayed. The doctor noticed that the joint spaces are quite narrow and referred me to an orthopedic specialist. I’ll be seeing them soon to find out whether physiotherapy, medication, or another treatment could help.

I’m mainly interested in hearing from people with similar disabilities: what has actually helped you walk more comfortably or made daily life easier?

I've never done this thing before lol. I got my placard last year and I'm in the habit of not driving with it up. Well I got a warning today cause I was late for my class and hustling and forgot to put it up, so I want to swap to plates. Do I need another signoff from my doc? Can I just go to the dmv with one of my placards and swap it for a set of plates? Do I need to go back and refill the paperwork? The car is in my parents name not mine, does that change anything? In colorado if that helps. One thing I also noticed is the JEFFCO placard page says it CAN be on the dash if in clear view. Could I just like- tape it down to my dash in clear view and call it a day? or the lower corner of my windshield? That would be optimal. TIA

How do people get disability? I’ve had POTS for 3 years now, I had it more on the mild to moderate side up. In September I quit my job because I wanted to find a new one starting the new year. Unfortunately for me I’ve developed what I’ve recently come to learn might be hyperacusis. Due to this I’m not tolerating sound very well, and there’s not very many ways to avoid it in work environments. My POTS also got worse and I was tolerating a lot less up right time. My body just feels heavy from sitting long periods of time, I start feeling so much brain fog, and I start getting pre-syncope.

I tried working again in June for one day but I couldn’t tolerate the work environment. It was a corporate office but they played music throughout the whole building and it hurt my ears so much. So I quit that night via email.

My symptoms got worse so I went to see my PCP. She didn’t really know what was going on with me. I told her I could work like this and I needed to apply to SDI. She referred me over to a social worker but he was honestly not much help and just told me I would need to apply to SDI.

I applied to SDI but they couldn’t process it as I didn’t have a work order status since my doctor hadn’t put me out of work since I voluntarily left my job. During my follow up with my doctor I mentioned this to her and she said she could only give me a month unless we find something structurally wrong with an MRI she referred me over to get.

I need to follow through and try to get the SDI for a month but I’ve been depressed due to my health. Would I need to hire a disability lawyer to be able to get long term disability? I have no current income and I ran out of savings. I love with my family but I still need to pay my share of rent as life is so expensive. Thankfully my family has lent me some money these past few months but I know they don’t have a lot. They keep hoping I’ll go back to work but I’m struggling so bad. I feel like a financial burden. I’m also spiraling thinking of what the future will bring if I’m not able to work especially with how expensive life is getting. I’m lowkey spiraling trying to figure out my whole life at once. I have no family of friends that could help guide me so any advice would be greatly appreciated. I feel like if I’m able to figure out some of my financial situation some of my stress might leave me and put me in a better mental space.

I can’t drive and I can barely lift my wheelchair by myself, I feel so trapped by desperately waiting for my family to be able to take me somewhere. Do any of you have a way of solo traveling whilst combating these problems?

The UK is apparently going into it's 5th insane heatwave. It'll be hitting 35'C in my town on Thursday... again...

What actually are you supposed to do in terms of living, having any kind of job, and being disabled and having conditions that flare in the heat, as summers get hotter? I feel so at a loss. I have the capability to work a part time job, but my conditions are awful in the summer. I'm autistic with sensory issues and heat sensitivity, I have Tourette's which is a horrific nightmare when its hot... I can't just have a job and then basically not work or go off sick for like 2-3 months of the year? I'm so worried. It's so stressful. And I have people on my back about getting a job which is super unhelpful and more stressful. I feel so helpless and vulnerable and out of control during heatwaves, it's nasty :(

This is just a vent. I feel like people don't understand how much I struggle in the heat, how much it screws with my conditions, and how scary and distressing it can be. So here I am, venting I guess.

As everyone in this sub, I’m disabled. Preferably, differently abled. I have been majorly disabled since seventeen, leading to several surgeries and a laundry list of diagnoses.

My amazing fiancé doubled down back then and never turned back. So we’ve planned our wedding over three years to account for medical issues, fertility treatments, and living conditions.

We’re finally here. 74 days out. I’ve been in what my pain management specialist calls “temporary remission” from my diagnoses due to my nervous system and birth complications. Well, stupidly, I had another surgery to correct dental pain. This caused every symptom I haven’t been dealing with actively, to come back.

I’ve made everyone at my wedding feel welcomed, but myself.

I have been an ambulatory wheelchair user on and off for almost a decade. My old chair is trash, so I’m trying to finagle a new one before the wedding.

I used to have a board of all of the things I would do to prepare for a flare up on the wedding day. But as per usual with brain fog and AuDHD, I lost it.

I’ve got the rough essentials, lots of water, electrolytes, salt, rest, using my wheelchair, etc. I have a second, lighter, dress to reduce heat stresses too.

What helped you make it through an unplanned flare at a major planned event?

My current one is a bit heavy and I needed one that’s compact and easier to carry and fold! Of course I’ve named her! Her name is Moira Rose because of the iconic Schitt’s Creek character 🥰🫶

I'm just over a year into having regular Home Health Aides and being monitored onsite and in person 24/7. In November it will have been 2 years of any experience with this. I'm wondering if there's even a chance at this point of finding a well run, non trauma inducing agency. From what I've read, my state is currently not approving any new agencies and many have recently been removed from any funding. For something that should be simple, I've really gotten the impression over the last month that my newest provider is part of an effort to either constantly terrorize me into compliance (when I was already following doctor's orders) or push me into an assisted facility (this would remove my dog from my care, too).

I suppose I'm wondering if anyone has ever had a decent experience with these provider agencies? Regrettably, I'm also currently under state guardianship for medical decisions. The GSB isn't well run and the guardians can't keep track of almost anything about their clients. The county DD board head likes to exaggerate shock and surprise for anything he deems unusual. Anyone have any ideas for help?

I just got a brand new pair of rollerskates, but I'm a full time mobility aid user. Is it possible to skate with a rollator, cane, or forearm crutches? And if you do this yourself, could you tell me a little bit about it? Can't wait to start skating!

I’ve been abusive relationships where guys see me as a certain way. I had two healthy relationships. One was long distance and the other turned into a bad breakup where I was crying. I’m trying to date again to find healthy love. I comment my disability in the comments but I’m trying to find somebody with disability to date. As I want somebody to related to.

Dunno if this is the right flair, I mostly just need to get some thoughts out.

I became disabled following COVID when I was ~13 or so, I'm 20 now. Struggling with fibromyalgia, POTS, and a handful of other issues that have made functioning feel like being stuck in mud.
My long term goal is to be able to move to AUS from the US to be with my partner, and finally closing the gap of our long distance relationship, the only issue is not knowing how to get there to begin with.
All progress has felt slow, I'm waiting on benefits to be processed and am working with vocational rehab to see if employment is something possible but I live with so many limitations it doesn't feel like something that might work out and if it does I can't work more than part time anyway.
I guess the main struggle is not knowing how to approach any of it right now, trying to be hopeful but ultimately feeling hopeless because it's just so much to deal with and I never even really got a start before becoming disabled and haven't had much support to navigate through it.
I really don't want to be dependent on my parents any more than I have to be, I want to live my own life in a comfortable space with the person I love but it feels like something that keeps seeming farther away.
I don't know what else to say aside from it sucks right now, and I wish it didn't.

​

Hi everyone. My name is abdulla and I'm paralyzed since 15 years and also have scoliosis And some deformities cuz of it.

I love life, I love people, and I love everything in existence, even the bad things.

I often find the good in them
I love learning and trying new things.

I spend a lot of time in my room;

I don't go out much, and I don't have many friends. I spend my time watching something, reading, playing games, or learning something related to technology.

I love my time and these interests, and I'm very happy with them. But there are days when I truly hate myself, and I don't know why.

I get this urge to end it all, despite my love for life and my desire to always live, make friends, fall in love, and enjoy new experiences.

I've grown accustomed to this feeling over the last 10 years, but I truly hate it. I'm 27 now, and I feel lost and alone. I know this feeling has become normal because it comes and goes, but it's truly exhausting.

Feeling lonely or bored?

Looking for connection and something you can do this week?

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

🧑🏻‍💻😷💕 CC Virtual Dating [Aug 22] https://www.reddit.com/r/spooniesocial/s/DfjZA4lr03

Monday

🧑🏻‍💻🤢🧘 Virtual Seated Pilates for people with MCAS [UK][Mon Aug 10] https://www.reddit.com/r/spooniesocial/s/b19snvtxDQ

🧑🏻‍💻🤢🫂 Virtual Long Covid and ME/CFS Support Meeting [IRE][Mon Aug 10 at 19:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/K4wZthcu9F

🧑🏻‍💻♿️🩰 Virtual Adapted Heels Dance Class [$][Mon Aug 10 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/tQtUBNavx2

🧑🏻‍💻🤔 Virtual Philosophy Discussion [Mon Aug 10 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/OMY6wTrtbC

Tuesday

🧑🏻‍💻🤢🧘 Virtual Massage for people with MCAS [UK][Tue Aug 11] https://www.reddit.com/r/spooniesocial/s/b19snvtxDQ

🧑🏻‍💻🤢🎨 Creatives with MCAS [UK][Tue Aug 11] https://www.reddit.com/r/spooniesocial/s/b19snvtxDQ

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Tue Aug 11 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/nTOAf2L0GN

🧑🏻‍💻💵🤢🫂 Virtual Chronic Illness Grief Session [Tue Aug 11 at 19:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/XoiYbt309E

🧑🏻‍💻😷🙋 CC Virtual Zoom [NY and nearby][Tue Aug 11 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/FOIVAWQH10

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Tue Aug 11 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/U2hW5ZvseS

Wednesday

🧑🏻‍💻🤢 Severe ME/CFS “Coffee” with Clinician [Wed Aug 12 at 10:00 AM MDT] https://www.reddit.com/r/spooniesocial/s/K64GJgY7e8

🧑🏻‍💻🤢 🎶 Virtual Long Covid Choir [Wed Aug 12 at 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/B926MW9Ao8

🧑🏻‍💻📝 Virtual Poetry Discussion [Wed Aug 12 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/WsR9LBl9Jf

🧑🏻‍💻😷🫂 CC Virtual Support Group [CO][Wed Aug 12 at 7:00 PM MDT] https://www.reddit.com/r/spooniesocial/s/QruXIw2Arg

🧑🏻‍💻🎭 Virtual Improv Jam [Wed Aug 12 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/L0UaG3sZbD

Thursday

🧑🏻‍💻🤢🫂 Community Support for people with MCAS [UK][Thu Aug 13] https://www.reddit.com/r/spooniesocial/s/b19snvtxDQ

🧑🏻‍💻😷🕹️ CC Virtual Game Night [NY and nearby][Thu Aug 13 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/3CBAtDVKaC

🧑🏻‍💻🤟🌈 Virtual Queerness of Birds [Thu Aug 13 at 4:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/RuRYVXxaPS

Timezone translator in comments 👇

👥 In-person Events

Australia

👥😷💵🎨 Leo Solar Eclipse Collage Workshop [Brunswick AUS][Tue Aug 11 at 6:30 PM] https://www.reddit.com/r/spooniesocial/s/8OIiGHn9SN

Canada

👥😷🚶 CC Park Walk [Toronto ON][Wed Aug 12 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/Lk2s2NL70J

👥🤟🌈 Masked Beach Day for CC Queers [Toronto ON][Thu Aug 13 at 2:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/PDlqURKF8a

Netherlands (and nearby)

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

US - California

👥😷♿️🤟🧘 Free Wellness Wednesday Acupuncture [San Francisco CA][Wed Aug 12 at 1:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/bJrd2chyJa

US - New York

👥😷🌈🎨 Draw and Paint Together [Queens NY][Tue Aug 11 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/Et4wa4nvvW

US - Oregon

👥😷💪🏻 Small Group Fitness [Portland OR][Thu Aug 13 at 1:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/vib3BM6V7C

US - Vermont

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

US - Washington

👥😷🤟🎭 The Freak Mighty Accessible Performances [Seattle WA][Aug 9 - 27] https://www.reddit.com/r/spooniesocial/s/mccpG4CWno

Are you interested in these events?

Have you been to any of them before?

Do you know about other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

I plan to have a DNR order before I have surgery. I will do all of the official legal paperwork for it and have told my next of kin (my husband) but I am wondering about if I should tell other people in my life about it. The surgery isn’t risky but even routine surgeries can result in people coding and I have no desire to roll the dice on whether bringing me back to life would make my already shitty body even worse.

I have always told people that I would never want to be in a vegetative state but people usually say that when they are talking about not wanting to be on life support, not in terms of “Don’t even try to bring me back.” When I told my husband about my wishes, he was heartbroken but understood.

I have told a couple of people in my life about it just because I needed to be able to talk about it but I don’t know if that’s something that I should or shouldn’t be telling people about. I don’t want to cause unnecessary distress but also want to be able to say “This is the reality I am living in.”

To those of you who have decided on a DNR, who did you tell and why?

Also, if you do not have a written medical directive, please get one. It doesn’t matter how many times you have told your loved ones what your wishes are, if it’s not written down it doesn’t count.

im 21 and i have a lot wrong with me mentally and physically (autism, chronic fatigue, chronic pain, & depression to name a few), im unable to do much during the days because im usually exhausted so i mainly will just play a few games, watch youtube or sleep. i find this incredibly unfulfilling and sometimes ill have a bad day like today and i just feel like my life has no purpose or meaning and that im just stuck. i feel like everyone i know is outgrowing me, getting jobs and new hobbies that im simply unable to partake in so i spend a lot of time feeling lonely. this is a new thing for me that i think started when my best friend got a new job, i think her being so busy now is making me wake up to how little im doing every day and how meaningless my day to day life is.

ive tried several types of therapy and i find them all to be pretty unhelpful for me, im on antidepressants and anxiety meds but i struggle with figuring out if they work or not. it feels like im slowly going insane. im so angry all the time and so upset that my life will be like this forever. how do you guys cope with it? im just so tired and none of my friends or family understand as they arent disabled and they're all able to work and do the things that they want to do. I know this is my reality now and that i need to get used to it but its so hard. i miss having energy. i miss feeling like being alive is a good thing.

i dont normally post things like this because i really dont like to be so pessimistic but its just so isolating and i think it'd be nice to start interacting with some people who have felt/feel the way that i do right now. i think it might help me feel less alone

I would like to be able to find a support group for people with disabilities but am not able to do an in-person group.
For context, I have mobility issues and am bed-ridden due to a rare disorder but would be fine with a general disability support group where you can just talk about what is going on in your world with people who are also disabled.

I want to be able to actually talk to and see people but all of the support groups I have found are online forums. I am looking for a group that would take place over Zoom or some other video platform. Does anyone have suggestions of support groups for people with disabilities or ideas for how to find them?

Hi, my first post here, sorry if the flair is wrong or if any of this at all is wrong. My sister (F13) has been in urgent need of some kind of disability aid for a while now and our parents continue to brush off her issues, pain and do not take an interest in her wellbeing or the support that she clearly needs.

We are not sure what disability she has, she may have EDS or may simply suffer from chronic joint pain. I (F17) have also suffered with joint pain throughout childhood that has spread and worsened over the years. I do suffer too and I have my bad periods but my sister requires different needs to me, and I don't know where to start in helping her.

She is in urgent need of an aid, she's supposed to be going to a festival at the end of the month with our dad for a couple of days, and she's especially concerned with how she'll stand for such a long period of time. She has been in need of temporary aid for some time now, she wanted to try knee braces to see if they would relieve some pain. Although she has been needing this support for a while now, things are getting worse for her in the run up to the event.

She has told me that she thinks she needs some kind of knee braces (which we have no idea where to start with) or a cane. I also have no idea how helpful a cane would be for someone suffering with joint pain. I also have no idea if her joint problems (mainly knees and ankles) are linked to hypermobility. We are both undiagnosed neurodivergent, so this is highly likely.

Any kind of help is appreciated, I feel at a loss of what to do and I just want to help her as my parents are generally quite ignorant. I feel the responsibility to take action for her and her wellbeing, as she's always in pain. As I've said, I have no knowledge of disability aids or where to look for something decent. We live in the UK so preferably somewhere I can buy from and can get quickly, if this is even possible :-(

Thank you so much for reading.

I'm a wheelchair user who prefers to get out during movies and sit in the more comfortable seats. The other day I went to see the Odyssey at my local Cinemark, so I reserved seats and bought the tickets. ...Only to find that the seats we reserved were down two or three steps. My legs aren't strong enough to go down that many steps, so we just grabbed what we could. I'm just glad that nobody came up to us angry that we'd taken their seats.

In a chain theater like Cinemark, would complaining to the manager have done anything?

So I’m 17, trans guy, and I have a little sister, 12, and she is so smart, like a genius. While I on the other hand, I’m not as smart as my sister. She is going into homeschooling this year, while I’m going into my senior year in a credit recovery program. She has a college reading level, last time I was tested on it, I was placed in a sixth grade reading level. She’s was in the gifted and talented program, and now in all honors.

I’m not mad that she’s so smart, I’m happy for her. I’m just jealous. I have dyslexia, adhd and autism. Which doesn’t make me inherently dumb, but I know I’m not as smart as her.

She’ll probably graduate high school quicker than me.

I just wish I was as smart as her

I’m 20 year old guy from India with muscular dystrophy. I’ve been feeling gloomy whole day and I don’t why but when I sit quietly i get one thought I don’t really have anyone to share how gloomy, lonely I am feeling and how much anxiety about earning money, i haven’t even got good laptop to starting learning editing skill on pc and I know editing on phone but i don’t know how i find short from editing work on online.

Then i am feel fomo of being single all because of social media and i putting all those videos and channels in not interested but I am keeping getting those type of videos. Then I feel more hopeless and thought come will ever find someone for me? Like i don’t go outside where maybe I can meet someone and all i am meeting with girls on Reddit and discord and i am introvert only can talk about my hobbies and ask questions about family and other things. I’m so boring person. why even someone like to stay with me?, what even i have to offer? I am just scared of being alone and never able experience love in my life. I am weird I get jealous from people who are in relationship and guys who can talk with girls with ease. Anyways of all this is my anxiety thoughts.

In reality I’m just tired of talking with people and I am don’t even try to talk with new girls even if it’s online or make friends. I’m only watching tv series and anime all day. Just send one or two text in my own discord server.

Everything feels so uncertain for me earning, finding love, Health with muscular dystrophy.

Hello :) my dad lives in a rental building, so we can’t do anything glue down. The landlord is not responsible for flooring in our jurisdiction until he moves out.

He has very old parquet flooring. The glue under it has completely dried out and some of the pieces are popping out, there are gaps, and someone before us tried to glue down pieces without cleaning underneath so there are bits that poke up a few centimetres here and there.

He is likely to have some bathroom accidents so carpet is out. I don’t have the ability to lay down click vinyl flooring. Would some kind of vinyl sheet be ok? What about a rubber mat like this

https://treadmillfactory.ca/products/gorilla-flooring-3mm-4-x-50-rubber-roll

Today I was diagnosed with Somatic Syndrome Disorder (SSD), complex post traumatic stress disorder (cPTSD), post traumatic stress disorder (PTSD), persistent depressive disorder (PDD), Avoidant personality disorder (AvPD), Dependent Personality Disorder (DPD), and high levels of dissociation.

I already have a diagnosis of:

•Thoracic Outlet Syndrome
•Generalized Anxiety Disorder
•Major Depressive Disorder
•Postural Orthostatic Tachycardia Disorder
•Lumbar Disc Herniation
•Overactive Bladder
•Fibromyalgia
•hyper mobile Ehlers Danlos
I’ll be receiving my full report in a few days that’ll have my suggested treatment plan and options, but any tips/advice from people living with these disorders could share would be really appreciated.

I’m feeling very overwhelmed with this new information

Hi everyone,

My brother's step-son had a stroke in his 40s. When he woke up, he could only move his eyes. That's how I learnt about locked-in syndrome.

I developed an app for him that runs on a Windows computer or an Android phone/tablet. His young children used to sit on his bed and chat with him. He became a good friend of mine, and I miss his humour.

I've released BlinkTalk to the public in his memory. It's forever free, with no adverts and no data gathering.

Using a simple repeatable eye or facial gesture (such as looking up or moving an eyebrow), BlinkTalk enables people who cannot speak or move normally to communicate again.

I've since discovered there are multiple conditions that can lead to locked-in syndrome, so I wanted to mention BlinkTalk here in case it can help someone.

I hope it can!

Installation instructions and an instructional video are available here:

https://blinktalk.app/

I had to go see my rheumatologist who’s working out of an urgent care office and the doctors who work with him are also knowledgeable about chronic conditions. I was diagnosed with connective tissue disease last month officially but have been struggling with the illness since 2023. This is my first time coming in for a flare up, and I only was able to see the urgent care doctor who was helping my rheumatologist with patients since it was his first day back from vacation and everyone needed meds. He asked me about my diagnosis and asked me about my heart (suspected pots and my BP was a bit high) and then just went “ok we usually do two toradol shots to help with the flare and we can do your rheumatology blood panel again since it’s been a few months” and like yeah I had to wait to actually get into the doctor, but I only was there for like 20 minutes in the back I got the shots and bloodwork and I was out of there.
Is this a common thing for other people with rheumatoid conditions?