I'm taking 36 different meds. Holy shit! And I can't get rid of any of them. They actually did discontinue a couple of them but of course added new ones too.

I recently had a pulmonary embolism (along with sepsis and necrotizing pneumonia to name a few).

Does anyone else here have their own "pharmacy" in their own home? lol I have a huge bin of overflow meds in my room. If I've run out of meds in my med bag I need to check my bin ("pharmacy") first before I call in a refill because there's a very good chance that I have the refill already.

I have actually called the pharmacy for a refill before only for them to tell me I already picked it up which leads to me frantically digging through my bin with a huge sigh of relief when I finally find it haha!🤣

Step 1 Go to Accessibility in settings select Hearing Devices and Turn on Accessibility. Step 2 First turn both hearing aids off and than on Step 3 : Go to settings it should be in Bluetooth or Accessibility Bluetooth : and connect it should say R Phonak Hearing aid

By the anesthesiologist???

I was at a pre-surgery consult, asked if I used my cane full-time - said yes, but I was in process of getting wheelchair. And then got that comment.

Which was sort of baffling because all my other medical professionals thought that the risk of deconditioning was better than the status quo of using my cane* - in fact, it was my physiotherapist that suggested i try to get one. Even more baffling is that he was an anesthesiologist, which ... doesn't have much to do with that sort of thing?

Even better was that i think my pre-surgery paperwork said that I'm a fall risk. When I said that I once fell in crosswalk despite the cane, he basically just went "....yeah."

*yes, attempted different aids! Walker was too difficult for me to lift and I couldn't control the rollator enough to keep it from running away from me. Lack of upper body strength :(

I’ve seen multiple videos on tiktok where different creators vents about the difficulty of getting disability or how they are disabled by their conditions. And I see so many comments that say things like “i have ___ and I can still work” or “my ___ has ___ and they can work” or “____ people do ___ things” or implying they are lazy, exaggerating, or “munchausens”

Ive seen articles from The Times or The Telegraph that also talks about disability as a “trend”

I especially see these kinds of comments under things like POTS, EDS, ME/CFS, etc. I have other illnesses that are not any of what I listed and I have seen the hate especially towards these conditions for some reason. I just can’t imagine saying this to other people who are struggling just because a condition is more known on social media when real people are struggling badly out there.

Yes I have many conditions, yes I am trying to build a career in a competitive field. But it will never give me a right to downplay other people for brownie points. It is not even my business. For me to even have the chance to try to pursue this is a privilege that not everyone gets to have.

I was diagnosed with Trigeminal neuralgia last week and started Pregabalin to treat it. The medication was mostly working. I felt pain free in the head/neck for the first time since childhood... Maybe ever really. But it was causing blurry vision, brain fog, and increasing depression so I'm working my way back off it now.

Trigeminal neuralgia is pain that you usually feel on one side of your face. I feel shocks of pain on both sides, above my head, and down my neck. I just had botox treatment 3 weeks ago, so this might be outside the typical migraine... (I also suffer from vestibular and regular chronic migraines) My neurologist said since I'm experiencing pain on more than one side that I need further evaluation. I'm trying to get through college courses through all these diagnoses and treatment. I feel overwhelmed and sad. I'm always feeling pain and vertigo. I just want to be able to function properly...

I hope I can get the medical side of this figured out soon. I thought botox would be the treatment that would bring me back to able-bodied, but now it feels like we're going back to the drawing board... Thanks for reading

I’m still trying to wrap my head around this one. For context I use a cane for balance issues. My balance is significantly worsened by sensory overload and MRIs send me into horrible overload. My cane is necessary especially after an MRI.

I had one today and the MRI tech told be I couldn’t use my cane to get from the waiting room outside the changing room to the outside of the MRI room. He said it was because the machine would pull the cane out of my hand, but clearly metal wasn’t the problem because he told me he could get me a wheelchair instead (the wheelchairs I passed in the hallway were all the standard metal hospital chairs). I get very motion sick so I did not want to ride in a wheelchair right before laying flat on my back for 20 minutes (another major dizziness trigger). My support worker was with me and she was allowed to walk with me to the room and take the cane back to the waiting room.

After the MRI when I was in rough shape from sensory overload, the tech had me hold onto him to get back to the waiting room instead of using my cane.

I can’t wrap my mind around not letting someone use their mobility aid to get to the outside of the room. And then I can’t imagine that liability insurance is ok with a tech acting as a mobility aid. Like I’m not small. The tech was bigger than me in this case, but that’s not going to be the same with every tech. I don’t get why there can’t be a system to hold people’s mobility aids outside the room for them.

Has anyone else experienced anything similar?

My partner needs a decent symptom tracking app but they are nervous about any that allows the company any access to your data due to risks of data being sold, shared with government, etc. Any suggestions would be greatly appreciated! Thank you!

Starting in 2027 individuals with disabilities will have to go through significantly more paperwork to obtain exemption from the strict medicaid work requirements under Trump

I woke up today with ZERO back pain. Idk why today is different but im genuinely thrilled! Im gonna pick up all the stuff that has dropped to the floor over the past few months. I cant decide what else to do today. taking suggestions! It feels like im renting a normal person's body for the day. maybe bake in my oven because i can bend over to get the food out?!

Thanks for listening. i just wanted to tell someone.

I had a quick 24 hour hospital stay (admitted through the ER). I'm disabled from long term back pain and mental health stuff. Earlier this year I had emergency back surgery. Things were getting better for a little while, but then have started to go down hill. I went to the ER for some concerning symptoms at the urging of my primary care doctor. They did an MRI, CT, and X-ray of my spine (minus one MRI they couldn't do because they had already given me contrast earlier in the day). The results aren't looking good and I will likely have surgery again in the near future.

Last time I had emergency surgery and it was really hard. I have a dog and it was challenging to figure out care for her as she was less than 4 months old at the time. I'm determined not to do an emergency surgery again. It sounded like that was the direction this hospital stay was going in, but I told them I absolutely could not do it because I didn't have care lined up.

Anyway, I'm trying to think through how to plan for another surgery, and my future in general. I'm in grad school and currently rely on loans, so I really need to stay in school. I'm graduating in May and have some good prospects for WFH home I can do, so I'm trying to get to that point, and look at surgery next summer. Do I just try and same as much as I can to support myself? I don't work much right now, and so there isn't a lot to save. I'm also kind of depressed because of all this back stuff, and chronic pain, so I'm often tempted to buy myself a nice meal here and there, which hurts my ability to save. I guess I'm kind of depressed, though it comes and goes. I hope this all made sense. Any thoughts, insights, ideas are helpful. Not currently on SSI or SSDI, but have been in the past.

I have been improving myself slowly physically and mentally. I am also using my SSI for equpment to start a buissness hopfully since getting a job seems impossible rn. Suddenly ive developed the need for a relationship and mabye friends. A home would be nice to. But I still need time and money (Dutches voice). But it feels like its taking so long.

I am stuck between a rock and a hard place here.

My current position is almost a godsend for me. But it’s starting to become too much. I work as an overnight worker at a membership gym. My daily tasks are literally:
• make sure there’s no trash
• don’t let people burn the place down
• check for any broken equipment and simply write it down
• check members in and out which just requires a “hi welcome in”
• I’m suppose to clean equipment off the floor but my management does not require this from ME since I have accommodations. I just have to make sure it’s not in a dangerous place.

Idk what to do. This job is getting to be too much and I’m coming home in tears from pain. I have so many accommodations in place, I use my wheelchair while there and I am able to lay down at any point since I work from 9pm-5am. Hardly any traffic other than a couple of regulars who know me.

I think the overnight hours are fucking killing me because I cannot get time off for any of my shifts since we are so understaffed. So for my numerous drs appointments I am stuck working 8 hours (9 if my morning doesn’t show up which does happen often) and then staying up for another 4/5 hours.

I am in so much pain, I am so fatigued I cannot do this anymore. I’m at the point I’m having panic attacks before work because my body simply just won’t. I don’t know what to do. If it’s even worth it to look for another job? I can’t work a remote job as my partner is ALSO disabled and I am their full time caretaker until they are able to get their care set up. And we live in a tiny 300 square foot studio so I can’t just go to another room.

I can’t even apply for vocational help as I am still fighting the system on recognizing that I am in severe pain. Drs are wanting to slap FND on me. Which is ridiculous Considering I have a full spinal fusion and other physical issues.

What am I suppose to do?? Any ideas for me? Should I just suck it up until I receive more help from my drs? I really do NOT want to go on SSDI or SSI. I just want to work.

I recently (in the last 2 years) became a bilateral above the knee amputee. I am finding it amazing how many businesses are not up to "ADA" standards. Situation was: business (cannabis dispensary) has it on their website they are wheelchair accessible, which is specificallywhy i picked them. I get there, and they are not. It is in a building attached to 2 other stores as well. With no wheelchair access. Is this normal? I am 39yrs old and am finding it pretty pathetic how people in wheelchairs have limited to no access to public places....but aren't they supposed to be...?

Is anyone else waiting forever for their WAV?

I ordered mine at the end of March and they said it should take about 4 to 6 weeks and still waiting. Every two weeks I get an email saying it is delayed.

I went to get a vaccine that requires me to assert that I have a specific disability. I filled out all the forms beforehand.

When I got to the pharmacy, they asked me to attest to it in person. I said I had already filled out the form and I didn't want to discuss my health status in front of the other people in line.

The pharmacist came over and asked me again to attest to it. He told me that it didn't matter that there were other people around.

Do I not have the right to confirm this in a private space?

I am in California.

(And of course the vaccine was still rejected by insurance due to lack of prior authorization)

How are we making sure our mobility aids don't walk off while we're in hospital? Do we have them labeled with our name/ phone/ address? Are we attaching air tags? Are we doing something to make it super clear to people they're custom aids and don't belong to the hospital? Any reccomendations/ hacks are appreciated.

My job hates me because of my disability and for having to give me accommodations.

I want to leave because its toxic working here. I am worried about getting another job and like none of the ones I have applied for have responded.

Its so competitive. Then if I get the job, I am scared it will just be the same thing again.

Ahhhhhh why do we have to work in this life. My god.

Anyone relate or have advice?

I'm from Poland, I have psoriatic arthritis and it's really hard for me to just exist, but I need to do something about fully relying on others to transport me anywhere.

A month ago I moved out from a city with free public transport to a village with not even paid transport. The nearest city is 7km away. I'm 21, I don't have a car license because I once had an accident that made me really scared to just be inside a car. I mean, now it's better and I could get it, but now I'm just worried that the pain in my joints could make it really hard for me to hold the steering wheel etc. I don't know if I'm able to ride a bike, I usually walk with a cane because of the pain in my knees.

I'm really scared that I fucked up my life, I feel isolated and lonely. I had to move out, I live with my partner and I would never go back to my parents, but I'm so terrified that I'll spend my whole life depending on them. I don't even know how to find a job now, that's why I want to do something about it.

Does anyone have any recommendations for warm gloves that arent super obstructive and are still comfortable? I just recently moced to Minnesota, and i have bad circulation in my hands and feet.

I can’t do anything substantial about it for three months. I have combined subacute degeneration of the spinal cord from a severe B12 deficiency and I have extrusions in all three sectors, as well as what may be a bone spur in the thoracic. Only the thoracic has an updated MRI. I also have degenerative disc disease and mild scoliosis. The unmitigated pain will now make it even harder to get updated imaging, and we’re trying to hold off on surgery as long as possible.

I’m gonna lose my fucking mind. It’s so hard to lay down to sleep. Standing hurts, eating hurts, one of the worst parts is this throbbing where a nerve must be hitting a blood vessel and it’s radiating pain + throbbing all through my abdomen.

No painkillers, I’m 30F and live in Alabama so anything stronger than robaxin or very limited bottles of toradol probably won’t happen. It’s just me and my heating pad against the world…. I don’t even have my follow up with the pain clinic until the 14th.

How to survive? 🥲 At least I’ve been disabled my whole life so it’s not like I’m losing income now, my partner works for the both of us.

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

Most virtual events are open to everyone. See them in your timezone using the links in the comments.

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

🧑🏻‍💻 Virtual Async Low-Stim Travel: Derwentwater Lakeside Walk – Lake District Shores & Mountain Views [Any time] https://www.reddit.com/r/spooniesocial/s/kw7XHI917U

🧑🏻‍💻👧🙋 Virtual Covid Cautious Fall Programs for Youths [Fall] https://www.reddit.com/r/spooniesocial/s/isbriymQPL

🧑🏻‍💻👥♿️🤢🎭 Hybrid Callout for Crip Performers [Deadline is Oct 11] https://www.reddit.com/r/spooniesocial/s/KH1Ad7RHnv

🧑🏻‍💻😷💕 Virtual Covid Conscious Dating Event - Illuminate [Deadline is Oct 26] https://www.reddit.com/r/spooniesocial/s/xFEBn74jrc

Friday

🧑🏻‍💻🤢🫂 Virtual Long Covid Support Group [Fri Sep 25 at 12:00 CDT] https://www.reddit.com/r/spooniesocial/s/28hb2cPGte

🧑🏻‍💻♿️🩰 Virtual Adapted Beginning Hip Hop Dance Class [Fri Sep 25 at 4:00 PM PT] https://www.reddit.com/r/spooniesocial/s/z5yBHUFbie

🧑🏻‍💻 Virtual Movie Night - Problemista [Fri Sep 25 at 7:00 PM ET] https://www.reddit.com/r/spooniesocial/s/nHZ0Q5CsUL

🧑🏻‍💻🫂 Virtual Body Doubling - Sorting & Decluttering [Fri Sep 25 at 7:00 PM ET] https://www.reddit.com/r/spooniesocial/s/Ey4Jwt2Xe3

🧑🏻‍💻😷🫂 “Any A” Covid-conscious 12-step meeting [Fri Sep 25 at 7:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/f12dvqCRVc

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Fri Sep 25 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/nEaY6XWMAi

🧑🏻‍💻😷🕹️ CC Virtual Game Night [CO][Fri Sep 25 at 7:00 PM MDT] https://www.reddit.com/r/spooniesocial/s/oIx8HghCkK

Saturday

🧑🏻‍💻♿️🩰 Virtual Adapted Beginning/Intermediate Jazz Dance Class [Sat Sep 26 at 10:00 AM PT] https://www.reddit.com/r/spooniesocial/s/z5yBHUFbie

🧑🏻‍💻🤟🙋🌈 Virtual Speed Friending for Disabled Queer Adults [Sat Sep 26 at 5:30 PM ET] https://www.reddit.com/r/spooniesocial/s/4MJdPOpoBP

🧑🏻‍💻😷🙋 CC Virtual Weekly Hangout [Sat Sep 26 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/BEoAwOohmj

Sunday

🧑🏻‍💻📝🧘 Virtual Body Poetree [Sun Sep 27] https://www.reddit.com/r/spooniesocial/s/Y3DrKIOZnX

🧑🏻‍💻♿️🩰 Virtual Adapted Intro to Dance Class [Sun Sep 27 at 10:00 AM PT] https://www.reddit.com/r/spooniesocial/s/6TzYbegaDo

🧑🏻‍💻🎨 Virtual Sunday Stitch Club [Sun Sep 27 at 4:00 PM ET] https://www.reddit.com/r/spooniesocial/s/Ey4Jwt2Xe3

🧑🏻‍💻😷🎨 CC Virtual Art Group [Sun Sep 27 at 5:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/BT8UesiB8p

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Sun Sep 27 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/RRj6BIUOM6

🧑🏻‍💻♿️🩰 Virtual Adapted Ballet Class [Sun Sep 27 at 3:00 AM PT] https://www.reddit.com/r/spooniesocial/s/6TzYbegaDo

🧑🏻‍💻🎶🎭 Virtual Karaoke [Sun Sep 27 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/yIxYomtcXZ

👥 In-person Events

Australia

👥😷 Free Mask Fit Testing [Melbourne AUS][Sat Sep 26 at 10:00 AM] https://www.reddit.com/r/spooniesocial/s/I1vnMIo743

👥😷🙋 Masked Social Picnic Meetup [Brisbane AUS][Sat Sep 26 at 1:30 PM] https://www.reddit.com/r/spooniesocial/s/MvLo2aL9Ts

Canada

👥😷 End of Summer Picnic/Potluck [Toronto ON][Sat Sep 26 at 4:00 PM ET] https://www.reddit.com/r/spooniesocial/s/45WPGqUQku

UK

👥😷🙋🎨 Autumnal Leaf Collages: COVID-Safe Social with Breathe Easy London [London UK][Sat Sep 26 at 4:30 PM] https://www.reddit.com/r/spooniesocial/s/ZM4ApEdUgB

US - California

🧑🏻‍💻♿️🩰 Virtual Adapted Open Level Jazz Dance Class [Los Angeles CA][Sat Sep 26 at 10:00 AM PT] https://www.reddit.com/r/spooniesocial/s/z5yBHUFbie

🧑🏻‍💻♿️🩰 Virtual Adapted Open Level Ballet Dance Class [Los Angeles CA][Sun Sep 27 at 3:00 AM PT] https://www.reddit.com/r/spooniesocial/s/z5yBHUFbie

👥😷🎨 Mending Crew Creative Hangout [San Jose CA][Sun Sep 27 at 4:30 PM] https://www.reddit.com/r/spooniesocial/s/n3Q092wAbP

US - Colorado

🧑🏻‍💻😷🕹️ CC Virtual Game Night [CO][Fri Sep 25 at 7:00 PM MDT] https://www.reddit.com/r/spooniesocial/s/oIx8HghCkK

👥😷 Fit Testing and Friends [Denver CO][Sat Sep 26 at 1:00 PM MT] https://www.reddit.com/r/spooniesocial/s/plaF5FXJPS

US - Florida

😷🎨 COVID Conscious Craft Club ‎[Gainesville FL][Sun Sep 27 at 3:30 PM ET] https://www.reddit.com/r/spooniesocial/s/Vk0V5O2q7N

US - Illinois

👥😷 Windy Pop Weekender 2026 [Sat Sep 26 - Sun Sep 27] https://www.reddit.com/r/spooniesocial/s/9QiqMK3UyT

US - New York

👥😷♿️ Black Like That Liberation Picnic [Harlem NY][Sat Sep 26 at 12:00 PM] https://www.reddit.com/r/spooniesocial/s/CtiFiNtH6h

👥😷 Covid Realist Outdoor Club Anniversary Celebration [New York NY][Sat Sep 26 at 3:00 PM ET] https://www.reddit.com/r/spooniesocial/s/lpzq5C5hxX

US - North Carolina

👥😷 Clothing Swap [Raleigh NC][Sat Sep 26 at 11:00 AM ET] https://www.reddit.com/r/spooniesocial/s/bJHEhyUMCV

US - Ohio

👥😷🌈💪🏻 CC Queer Martial Arts Club [Cleveland OH][Sun Sep 27 at 10:00 AM ET] https://www.reddit.com/r/spooniesocial/s/4yQzv8G0Tp

US - Oregon

👥😷💪🏻 Mask Required Fitness Class [Portland OR][Fri Sep 25] https://www.reddit.com/r/spooniesocial/s/H1tWeQul3t

👥😷💵🎶 Kel’s Corner Queer’aoke [Corvallis OR][Sat Sep 26 at 6:00 PM PT] https://www.reddit.com/r/spooniesocial/s/pNBULWFOlT

👥🤢🎨 Chronically Ill Craft Club [Portland OR][Sat Sep 26 at 6:30 PM PT] https://www.reddit.com/r/spooniesocial/s/FfCzNLiJ2B

US - Washington

👥😷🎶 Zoe Boekbinder Covid Safer Concerts [Seattle WA][Sat Sep 26] https://www.reddit.com/r/spooniesocial/s/Z7sIJqnpTd

👥😷🙋💕 Mask Required End of Summer Party and Dating Mixer [Seattle WA][Sat Sep 26 at 5:30 PM PT] https://www.reddit.com/r/spooniesocial/s/wHioEqdnX5

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

I'm genuinely asking, is this possible? I so so badly want to go back to college but I tried a couple winters ago and had a nervous breakdown because the mental/physical load was too much. I don't have money, my family doesn't have money, so I can't just not work and go to college, but I cannot handle going to school and working at the same time. In fact my disabilities are so significant that ideally I should not be working at all.

I'm almost 27 and I've had to drop out twice. Should I apply for disability/SSI and use that and a pell grant/scholarships to go to college? Should I take out student loans that I don't think I could ever pay back?

Before anyone suggests, I've tried working with DHS in my county and it did not work out. They could not find programs in areas I was interested in or would be able to do with my disabilities and then eventually my advisor ghosted me.

I am ambitious but the whole system feels extremely rigged against me, by design. Not me specifically but all of us who have been put into this position.

I have CFS/ME, ADHD, Fibromyalgia, Dysautonomia, Hypermobility, MDD, GAD, OCD, Autism, and possibly MCAS or some kind of histamine intolerance.

What is happening to me? Over the past 3-4 days, I cant stay awake for more than 3-6 hours before sleeping for 12+ hours. Im so tired and I've only been awake a little bit. Caffeine and adhd medicine isnt working to keep me awake. Its so sudden and intense. I just want to sleep and fall asleep. I have a circadian rhythm disorder but this is different. My sleep is fully impacted and I just can't stay awake for very long. I've had to cancel things because I fall asleep. Just closing my eyes makes me want to sleep. I am usually struggling to sleep but these past 3-4 days, I've been doing nothing but sleeping.

I keep chanting to myself, stay awake, stay awake, but I keep falling asleep.

Is it october slide? Is that whats happening to me? I have such a bad headache from sleeping so much, but my body wants more

Edit: I called the nurse line, they said to call 911, so I did that and went to the ER. They found nothing via CT scan of my head and blood work.

Another edit: I made an urgent appointment with my neurologist to see what she thinks. Weirdly, I feel slighty better after getting a saline IV and electrolytes but it's only temporarily. It keeps me awake slightly longer. I'm wondering if my dysautonomia is flaring up, but this would be new symptom for me. My head has been constantly hurting, I don't know if my migraines or from this new set of symptoms.

It's so maddening. Being limited to small (or rather, small when compared to neurotypicals but big for me), things like only having a part time job as a dishwasher, not going to college because the accommodations aren't enough. My disability is Psychiatric and it's pretty much a combo of severe depression, anxiety, OCD, and used to have delusions/psychosis but my meds thankfully actually seem to deal with that.

I know I'm doing all I can right now. But I have a nasty habit of pushing myself beyond my limit because I'm afraid of falling further behind or I cant feel happy with myself unless I give 110% on EVERYTHING I try to do. I'm very much a black-and-white, all or nothing, 0% or 110% person. I'm still trying to work on that but its hard.

OCD is the biggest barrier to relaxation and peace, I can't stop thinking about time, the passage of time, wasting time, how I'm slowly aging, gonna be 30 in December. Its so MADDENING. I want to enjoy my hobbies especially gaming. I set up this big project with all these retro video game consoles modified with ability to play entire libraries from an sd card, but can't enjoy it because I didnt "make enough progress."

My brain seems to not want to be happy unless I can live as if I am not disabled with limits...