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potsiepumpkin · 10 months

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Useful information

#chronic illness #chronic pain #disability #pots syndrome #postural orthostatic tachycardia syndrome #chronic fatigue #invisible disability #spoonie #fibromyalgia #potsie #tiktok

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mybodychoseviolence · 13 days

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“surely this will not cause my chronic illness to flare up,” i say, actively doing something that has never failed to flare my chronic illness

#chronic illness #chronically ill #chronic fatigue #chronic pain #disabled #disability #pots syndrome #potsie #pots #joint pain #migraine

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chronically-evie · 7 months

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my mom keeps trying to get me to go to the ER when im having a flare up and i have no idea what to tell her.

because ive BEEN to the ER before. you wanna know what they did? while i was sweating, shaking, and sobbing, curled in a ball of pain?

they asked me if i was on my period. when i told them no, they asked me if i was pregnant.

when i told them no, because i wasn't sexually active, they forcibly tested me anyways, and then when it came back negative said, "well maybe you should just take a few deep breaths", gave me liquid ibuprofen, and sent me home.

disabled people, in this particular situation disabled afabs, are never fucking listened to.

the ER staff literally LAUGHED at me multiple times. they pointed at me when i was having one of the worst episodes of my life and snickered.

so no, i do not want to go to the fucking ER. my heating pad, ice packs, and nausea meds are going to help me more than anything a hospital could do.

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butchboybisexual · 4 months

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able bodied people, ask yourselves this:

is your disability allyship conditional, or convenient?

will you be willing to not use fancy fonts or symbols if someone with a screenreader asks you not to online?

will you judge someone with an autoimmune disorder for having skin infections you deem gross or unsanitary?

when a deaf person speaks differently than a hearing person, will you still take them seriously?

when a nonverbal person needs an AAC or text to speech device, will you still include them in your conversations?

when your mobility aid using friend needs help in an inaccessible area, will you wait up for them, or help them if they ask?

when someone with tourette's is having trouble getting their point across because of tics, will you be patient and listen?

when someone with a stutter is having a conversation with you, will you take them seriously?

will you listen when someone with an invisible disability needs the big stall, or the accessible seat on a bus?

When your college with POTS needs to snack on salty foods, will you find them annoying?

when a person with hyper-mobility stretches and their arms bend out, will you stare?

#rabiespride #disability #disabled #spoonie #disabilties #pots syndrome #potsie

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i-the-spoonie · 9 months

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Feeling this right now :(

#disability #chronic illness #spoonie #mecfs #myalgic encephalomyelitis #pots #actually disabled #potsie #spoonie memes #barbie #disabled #ableism

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pots-plus-pans · 1 year

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destigmatize having a body/body parts that look “gross”

destigmatize having a reoccurring rash that you can’t control

destigmatize “strange looking” veins

destigmatize “gross” scarring

destigmatize having bodies that are broken and express that

destigmatize being disabled and having “atypical” physical manifestations of said disability

disabled bodies are beautiful

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apologyacceptedcaptainneeda · 2 months

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DONT take a persons medical device

I shouldn’t have to say that but here we are

One of the managers at work likes to take and hide peoples stuff as a joke. My manager took my pulse ox when I wasn’t looking. When I noticed it was gone I started to panic. A pulse ox is minimum $30 and I’ve had mine for over 7 years and have named it. So yeah I was panicking. I immediately paged my manager to my register and when he arrived I demanded it back. He did give it back.

I informed him that it was stupid and dangerous of him to take a medical device from someone especially like that.

So again

DONT TAKE A PERSONS MEDICAL DEVICE

#spoonie #actually disabled #disabled #disability #medical devices #pulse oximeter #actually spoonie #low oxygen #oxygen saturation #potsie #pots syndrome #postural orthostatic tachycardia syndrome #chronicallyawesome #chronically ill #actually chronically ill #chronic illness #chronicwarrior

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rainbowchihuahuabunny · 6 months

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Every day I am brutally reminded in one way or another that this society isn't built with disabled people in mind

#actuallyautistic #actuallybipolar #chronic illness #chronic pain #chronic fatigue #chronically ill #ehlers danlos syndrome #pots #potsie #spoonie #fibromyalgia #spoonie pain #actuallydisabled #autism #autistic pride #autistic #autistic adult

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forsakeofabetterusername · 3 months

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I made a zine about adjusting cheaper wheelchairs, after adjusting my NHS wheelchair.

Notes: Your wheelchair ‘service manual’ is a good resource for adjustments! You can often google them. Also, with the wheel adjustments, be prepared to move the breaks. Google how to measure for a wheelchair to find your seat width, and if you want to get extra, look at seat depth. Leg length is usually done by adjusting the footplate height.

Image description and printable version under the ‘read more’ .

Image Description:

An 8 page zine. Both images have the same content but the first one is arranged to be read on a computer. I am going to describe each page.

First page reads “A cripple’s guide to.. making a cheap(er) wheelchair work for you” and in smaller writing “by Sock - who uses an Invacare Action 2NG”. There is a drawing of a wheelchair in the centre.

Page 2 reads “Choosing a wheelchair. Look for adjustability (can you change wheel height? COG?), seat width (as close to your size as possible), and arm rests that can be lowered/removed.” Each item has a small drawing illustrating the point.

Page 3 reads “Adjusting a wheelchair. You will need… Allen key set (bike ones are good!), Pliers (for holding bolts) and Phone (for access to manuals, taking photos at each step.” Each item has a small drawing of it.

Page 4 reads “1. Adjust Wheel height. This can be done where the wheel “plugs in”. Your fingers should touch the wheel hub centre. If you can, move the wheel forward too (centre of gravity adjustment).” There is a small drawing of the wheel base, an arm reaching down to touch the centre of the wheel and a wheel base with an arrow pointing to the right showing it being moved.

Page 5 reads “2. Arm rest adjustments. Get your armrests as far down and as far back as they go. I keep mine on because of muddy weather/to protect clothes from spokes but you can also just remove them!” There is 2 drawings of a rounded and straight arm rest.

Page 6 reads “3. Modding castor wheels. Adjusting the height will change the seat angle. Smaller castor = easier turning, but makes rough pavements harder.” There is a drawing of a tilted chair with big castors and a straight chair with small castors, with a double pointed arrow between, with the caption “Play around!”

Page 7 reads “4. Footplates. You can take the footplates off and toe propel. You can make a foot sling out of a belt/luggage strap/paracord.” Both have an accompanying illustration. Then there is a note saying “if you have poor circulation, weakness, etc. oh might just want to keep the footplates on”.

Page 8 reads “5. Cushion. You need a cushion for your chair. Depending on how long you sit/how bony you are, you might need to spend a little more” then “£: Foam. ££: pressure relief cushion. £££: EBay/second hand for jay, invacare, low zone etc.”

End.

Printable version:

#forsakeofabetterarttag #hope this helps someone #wheelchair #nhs wheelchair #hospital wheelchair #cripplepunk #physically disabled #heds #spoonie #potsie

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800-dick-pics · 3 months

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Support my Service Dog in Training!!!

This is my 10 week old great dane mix SDiT! This big boy has a necessary vet appointment this week and next week for his puppy vaccines. We also need to get him puppy socialization classes, training tools and gear as he grows. Please support us on our journey to becoming a service dog team!

CA: $sleepyhen

VN: wildwotko

DM 4 P@ypal

#service dog #chronically ill #ehlers danlos syndrome #potsie #disability justice #spoonie #I love my little gentleman! he is so sweet and smart!#if you can pls support n share

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thelupuslady · 1 year

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#autoimmune #lupus #lupus warrior #spoonie #fibromyalgia #lupus advocate #lupus fighter #strong #chronically ill #pots syndrome #postural orthostatic tachycardia syndrome #potsie #pots #ehlers danlos syndrome #ehlers danlos zebra

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potsiepumpkin · 6 months

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I cannot believe loved ones would look a chronically ill person in the eyes and say that we’re just “choosing to live this way.”

I assure you I would much rather not have to live the way I do.

#chronic illness #chronic pain #disability #pots syndrome #postural orthostatic tachycardia syndrome #spoonie #chronic fatigue #invisible disability #potsie #fibromyalgia

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justsomerandomgay · 2 months

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abled people don’t seem to understand why i try to avoid getting a cold like it’s the plague, like mate im literally chronically ill, i don’t need another illness on top of it!

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mybodychoseviolence · 3 months

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just because i am open about being disabled and consider it a part of my identity, that doesn’t mean i’m happy about it. it just means that i refuse to suffer to make myself more “convenient.”

#chronic illness #chronically ill #chronic pain #chronic fatigue #disabled #disability #pots syndrome #potsie

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audhdnight · 2 months

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Petition to add more disabled magical creatures in fantasy

Like picture a mermaid. When they have to be on land their tail turns to legs, but because their body is used to lower gravity their joints tire easily and are chronically in pain.

Also depending on how deep in the ocean they live, it’s likely they have circulation problems because their body is used to the water pressure holding everything where it needs to be and now their blood is always fucking pooling in their legs and they have to wear compression socks everywhere.

Wheelchair user mermaids. Partially/fully blind mermaids because who needs to see when there’s no light at the bottom of the ocean?

Mermaids with sensory issues who have to wear headphones all the time because sound is so much louder up here on land and they are constantly overstimulated. And also the sun is simply Too Bright™.

Mermaids who have POTS because in the water postural changes make no difference and their bodies don’t know how to stabilize with so much gravity.

I’m really fixated on the mermaids rn but PLEASE feel more than welcome to add more!!!! I wanna hear about disabled dragons

#fantasy #high fantasy #disability #mermaids #disability representation #books and reading #fantasy books #dragons #potsie #chronic pain #chronic fatigue #wheelchair users

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helios-hawk · 2 years

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i hate you breathlessness i hate you brain fog i hate you dizziness i hate you tremors i hate you joint pain i hate you fatigue i hate you racing heart

#text post #pots syndrome #potsie #potsawareness #chronically ill #chronic illness #fibromyalgia #fibro problems #cripple punk

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