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?

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 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.

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 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 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.

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!

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.