consider-your-potatoes-mashed

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Why are physically abled people so stuck on getting off of or out of mobility aids????

#disabled #disability #actually disabled #chronic illness #physical disability #chronic pain #hypermobility #pots #pots syndrome #mobility aid #babe with a mobility aid #mobility aid user #mobility aids #physically disabled #ableism #able bodied

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fuck I hate having POTS all I’ve been doing for the last half hour is lay down. Why the fuck is my heart racing and pounding???????

#disabled #disability #actually disabled #chronic illness #physical disability #chronic pain #hypermobility #pots #pots syndrome #mobility aid #potsawareness #potsie #why is pots like this #disautonomia #tachycardia #health #high heart rate #fuck this

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Okay, so i'm studying marine biology in college so I have to take a general chemistry lab, I also have POTS. I have now learned that these do not mix well. The lab obviously has many safety measures that it needs to follow. When in the lab everyone has to wear a knee length lab coat, full length pants, long socks, latex gloves, safety goggles, and closed toed shoes. The dress code makes me over heat extremely quickly and makes my heart rate spike super high too. As a result I become very dizzy, light headed, and feel as though I am going to pass out. I'm terrified to pass out in the lab since we are at tall lab benches and we are working with chemicals that can have serious health effects. I told my professor, my TA, and the office for disabilities (OSD) on my campus but nothing has been helpful. I'm honestly scared to go back into the lab but the class is required for me to graduate. I don't know how i'm going to be able to do this class. I also have chronic pain and generalized hypermobility (working on getting an EDS diagnosis) and I use forearm crutches or smart crutches and knee braces which also make moving around the lab difficult.

If anyone has any suggestions on how to make this class easier please tell me or if anyone has any suggestions as for how to make the professor/osd understand

edit: I dropped the class because it’s just not worth the risk

#disabled #disability #actually disabled #chronic illness #physical disability #chronic pain #hypermobility #pots #pots syndrome #mobility aid #postural orthostatic tachycardia syndrome #chemistry #chem lab #chemistry lab #college #university #disabled student #mobility aid user #physically disabled

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hate how obnoxious abled people get the moment i so much as vaguely imply any part of my disability might possibly be permanent

i understand that the mere concept scares you shitless and your feelings are valid etc but fucking keep it to yourself, yeah? maybe read a book about how not to be an ableist cunt while you're at it

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Something I want able bodied people to understand is that I don't wanna be sick so bad; I want a diagnosis because there is already something wrong with my body but I don't know what the fuck it is.

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Does anyone else feel their knees slipping(?)/moving in the joint when you bounce your leg?????? Or is this just a me thing?

#disabled #disability #chronic illness #physical disability #chronic pain #hypermobility #autism #sensory #sensory issues #knees #knee pain #generalized hypermobility #hypermobile joints #adhd #can’t sit still #undiagnosed something

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having to rotate like a sardine in bed because laying in one position for too long hurts

#too real #relatable #pain #disabled #young and disabled #chronic pain #joint pain #mobility aid #forearm crutches #disability #generalized hypermobility

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Just for once I’d like to tell the gate agents and flight attendants that my folding wheelchair is going into the onboard closet and not have them tell me there’s “no room”. Bitch that’s a wheelchair closet, not a “your bags” closet. Move your damn bags where they belong.

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always remember, you do NOT deserve the pain, you did NOT "earn" it, it's not some kind of karma that you have to pay for, it's NOT your fault, you're not guilty for your illness and never will

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How the fuck am I supposed to explain chronic fatigue to someone??? Like I need at least one nap a day to even kind of function in addition to going to sleep earlier than most people might. I am constantly exhausted, I wake up exhausted and I end the day absolutely drained and then I’m expected to do it all again the next day. How the fuck do I explain that sometimes even doing nothing is exhausting? How do I explain that I can’t do things sometimes because I’m so far past tired that I’m essentially not functioning? How do I explain to someone who says they get exhausted but can still function when they’re at that point that my exhausted is completely and utterly different?

#disabled #disability #actually disabled #chronic illness #physical disability #chronic pain #hypermobility #pots #pots syndrome #chronic fatigue #fatigue #exhausted #exhaustion #I need a nap

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Okay so I’m heading back to school after spring break and my trip was AMAZING like seriously I loved it but wow I’m in so much pain now from everything we did. I had rest time and most days were laid back but damn even still. I made the mistake of bringing neither my crutches nor my braces with me because I thought they’d be a nuisance rather than helpful but I have definitely come to realize that any potential level of nuisance-ery is far less than the helpfullness of them. I hopefully won’t make that mistake again.

On another note screw the stairs you have to take up to a plane sometimes. Those are so wobbly and steep and long. And oh my my knees wanted to CRY.

#travel #traveling disabled #disabled #disability #actually disabled #chronic illness #physical disability #chronic pain #hypermobility #pots #pots syndrome #knee braces #disabled travel #knee pain #generalized hypermobility #hypermobile joints #joint issues #joint instability #joint hypermobility #joint pain

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I just want to not be in pain.

I just want have parts of my body not be numb.

I just want to be able to go up a flight of stairs without feeling like I’m dying.

I just want to be able to go on a walk and actually enjoy it rather than have to think about how close the next bench is.

I just want to not have so many gi issues.

I just want to not be sick all the time.

I just want to be able to go through a day and not be absolutely exhausted by the end of it.

I just want to be able to live and not have to worry about whether I’ll be able to do what I can do today tomorrow.

I just want to have a body that works right.

#disabled #disability #actually disabled #chronic illness #physical disability #chronic pain #hypermobility #pots #pots syndrome #knee braces #postural orthostatic tachycardia syndrome #joint hypermobility #generalized hypermobility #undiagnosed something

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I finally got my custom knee braces!!!! I’m so fucking happy I just wish it didn’t take this long to get it authorized. I’m so lucky too that my insurance covered them because otherwise they’d be ridiculously expensive. They were 3D printed to match my legs so they fit so perfectly. Getting used to them is hard because they make my leg muscles have to actually work rather than just going along for the ride and my joints don’t hurt as fast during the day. Walking is so much better now. I’m so fucking happy omg. I’m so thankful to my sports medicine doctor who wrote the letter that was hugely responsible for getting my insurance to approve them.

Now I need custom fit braces because of the significant size discrepancy between my thighs and my calves. Every pre fabricated brace I have tried or wanted to try didn’t fit me in so many ways. Either they didn’t go big enough to fit my thighs or they fit my thighs but were too big for my calves or they wouldn’t sit right on my knees or so much else. But I finally have amazing braces that fit perfectly and actually stay on my legs and for that I am so thankful.

These braces have made such a big difference in how active I’m able to be and how I’m able to do physical therapy. With these braces I can actually get my knees and legs closer to where they need to be without the same kind of pain and instability that I have without them.

Now I’m working on getting a disabled parking placard because while walking is easier it’s still hard because of my joints and fatigue and also because of my POTS and just everything else that’s wrong in my body. So I have an appointment with my gp to work on the paperwork and then I’ll go from there to apply. I’m so happy that I’m finally able to get even just some of the help I need and for that I am so grateful.

#disabled #disability #actually disabled #chronic illness #physical disability #chronic pain #hypermobility #pots #pots syndrome #eds #hypermobile joints #knee braces #bilateral knee braces #physical therapy #medical #undiagnosed something

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I hate that out of fucking nowhere I just get sick and nauseous. Like wtf is this shit??? I didn’t do anything????

#disabled #disability #actually disabled #chronic illness #physical disability #chronic pain #hypermobility #pots #pots syndrome #sick #chronically ill #migraine #high heart rate #undiagnosed something #undiagnosed chronic pain

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Things my body can’t tolerate:

- Heat - Cold - Humidity - Rain - Extreme Dryness - Over exertion - Mild exercise - No exercise - Standing up - Sitting down - Lying flat - Lying on my side - Lying on my back - Lying on my stomach - Sleep - No sleep - Eating - Not eating

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i feel like if you put any “normal” person in my body they would probably panic

#pots syndrome #chronic illness #disabled #disability #actually disabled #so real #putting me in my own body sometimes causes panic

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Ya know I really wish sitting didn’t feel like I was fucking sprinting. Why for the love of everything does my heart rate decide to be 140 when all I’ve been doing for the last 20(? probably more) minutes is be sitting down. Fuck I hate disautonomia

#disabled #disability #actually disabled #chronic illness #physical disability #pots #pots syndrome #disautonomia #high heart rate #heart rate #postural orthostatic tachycardia syndrome #I’m not even doing anything #I’m literally just sitting here #well now I’m laying down because sitting was too uncomfortable #but anyway fuck this shit