wheelchairtetris

[wheelchairtetris]

"3 day workweek summer is so great!" "I can do so many things!!" Local man has collapsed the day before returning to work from a 5 day break.

[wheelchairtetris]

Feel free to share why :] -especially if your custom chair is heavier. people have a perception that custom wheelchairs are always lighter than standard wheelchairs. this isn't always the case and I'm curious how many people have heavier custom chairs.

[wheelchairtetris]

Hhh I can always tell when im entering a fatigue flare / overdoing it too much. Not by how terrible my body feels. But by how weird and twisty I end up sitting in my wheelchair.

[wheelchairtetris]

Always putting things on my lap and then forgetting them until I transfer out of my wheelchair. Just spilled a small pile of paper clips and binder clips across the bathroom floor at my work bc I forgot they were on my lap!

[wheelchairtetris]

i strongly believe that it's better to take aspirin of a known dosage than to take some willow bark with an unknown amount of active compound that could also just be sawdust from an unrelated tree. like that's just factually correct. medical science is real and the supplement industry is an unregulated nightmare of mostly scams. but. the thing is. if, in order to get aspirin, i had to schedule an appointment where i tell my doctor that my friend said i might have a headache (because i can't just say i have a headache without being treated like a googlemad hypochondriac). and then the doctor nodded and ordered a bunch of expensive tests that have very little to do with my head and a lot to do with the size of my ass. and the tests all came back fine so he shrugged and asked if my head hurt and when i said yes he prescribed me some aspirin while emphasizing he didn't know if it would help but i could give it a shot if i really wanted. and if i had to do that every time i wanted some aspirin. i would probably start eyeballing the willow bark. to be perfectly honest with you.

[wheelchairtetris]

Doctors are like: ughhhhh. You're confusing. Come back if you die

[wheelchairtetris]

[forgetting I am mentally ill] why do I feel so Bad

[wheelchairtetris]

wheelchair accessibility I never see talked about

table height

aisle width

center vs side poles for tables

spots to sit in rooms/adutioriums/etc. that aren't blocking aisles

sink height and sink cabinets

toilet height

cash register height

the height of just so much, I could go on

benches/trash cans/scooters/bikes & bike racks/restaurant patios/etc. taking up sidewalk space

light poles placed in the center of the sidewalk

tilted sidewalks

lack of cross walks (jaywalking is not an option for me!)

overgrown brush over sidewalks

[wheelchairtetris]

When will it be my turn to be put down like a sick dog

[wheelchairtetris]

i think you should be able to emoji react to MyChart lab results

[wheelchairtetris]

there should be a website for reviews for doctors and hospitals but the community is like Reddit snark pages and you can view in full all of the problematic shit they have said and done and billed people for. I think it would be fun

[wheelchairtetris]

[wheelchairtetris]

Friendly psa that if your disability is visible thanks to aids/devices, that does make you visibly disabled, but you'll probably have different experiences to people who look physically different, and that's okay. Different experiences are cool and it's not cool to talk over each other/diminish others' experiences, thanks for coming to my ted talk.

[wheelchairtetris]

we had a big thing about reminding everyone of the tenants of cripplepunk. well i think people need to remember the explicit acceptance of the "bitter cripple". someone who doesn't want their disability, resents their mobility and disability aids. someone who also doesn't have time or energy to pander to everyone else around them, abled people and disabled people alike. like. if a blind person doesn't want to humour sighted people, or an obligate wheelchair user doesn't relate much to ambulatory people and doesn't care to, or a Deaf/deaf person doesn't care for hearing people like. that's not infighting, they're not being "too mean" or "spreading hate" they're just another person having preferences. and they might not give a shit that you're also disabled and that's fine. we don't owe it to each other to pretend to relate to every other disabled person on earth, and some disabled people don't want to bond over disability, shared or otherwise, and some disabled people are focusing their energy on staying alive. like what are you doing by jumping in and immediately acting like wheelchair users or whatever are big meanies for not relating to you.

[wheelchairtetris]

I "water" mine down with warm milk and sometimes cocoa to make it hot chocolate-y!might be unpopular but I enjoyed it a lot as a warm beverage. Like briar said, milk also makes it like chocolate milk, less thick.

I recently discovered dark chocolate ensure and it’s the best thing ever. Do you have any ideas for what i could water it down with if i can’t have coffee? Right now i can manage one ensure in the morning but if i drink another later i cant keep it down.

I wonder if watering it down in milk or almond milk would work to make it like chocolate milk! I've also heard it makes really good milkshakes!

[wheelchairtetris]

medical neglect (aka not being given treatment, assessment, aid, monitoring, or basic info on your condition when you need it) and iatrogenic harm (aka health issues caused by medical intervention or examinations, especially when excessive, inappropriate, or coerced) seem like opposite ends of the healthcare spectrum but are absolutely two sides of the same coin. most people who’ve experienced one seem to have experienced the other on another occasion, or even simultaneously, maybe even both from the same doctor. it’s so common that one area of your ailment or disability will go seriously neglected while another is overtreated, and it often seems as though healthcare professionals actually use the overtreatment in one area to justify/redeem their failure to adequately treat the other area

the experiences of neglect and of iatrogenic harm/overtreatment both deserve a voice; people deserve to be able to discuss every element of how their healthcare has failed them or harmed them, whether through the action or inaction of the people or systems involved, and whether it was a matter of ignorance, accident, habit, arrogance, or vested interest, e.g. prescription for profit. and while it’s often perceived as scaremongering to talk about these things (especially accounts of polypharmacy coming from mentally ill patients), i believe there is ALWAYS a place in the conversation for patients sharing their lived experiences of medical trauma.

but herein lies a further problem: sharing lived experience is very difficult unless you can identify and find words for what happened to you. ive been mulling this over and i think the common belief that neglect and overtreatment are mutually exclusive opposites (whereas actually, they overlap a lot) means that a lot of people never actually realise theyve been neglected or overtreated.

“it can’t have been neglect, the doctor was really friendly and they gave me 20 weeks of CBT and so many different mindfulness resources” but did they ever actually do a basic thyroid check when you came to them with textbook hyperthyroidism symptoms? when you told them you have a racing heart and constant sweats, did they even bother to take your pulse and do a blood test, or did they just announce that anxiety was the culprit without any physical investigation?

“it can’t have been overtreatment, they never actually diagnosed me or examined me or gave proper treatment for my main issue” but they prescribed you 14 stopgap medications in the interim, all of which gave you additional side effects which masked your core issue even further, plus they encouraged you to take otc ibuprofen round the clock without providing you advice on how to protect your stomach lining, and now you have a stomach ulcer. your overtreatment enabled your neglect, and your neglect enabled your overtreatment. none of this is ok

[wheelchairtetris]

Eventually I move on from crying to frustrated and angry and truly the worst person to be around

third (fourth?) day in a row crying breakdown from pain