remustheravenclaw  asked:

Thank you for that reblog about EDS and PT! I have some sort of hyper mobility, not sure what, and several years ago went to PT for a clavicle that had been sublaxed for several years. The exercises I was given seemed to make it worse and I stopped going. Now I know why it probably didn't work. That article you linked is now on my to read list. Thank you again!

No problem! :) I had the same problem with PT. After my first spine fusion my neurosurgeon specifically referred me to this one PT, so I thought I could trust him. But everything made me worse. Every exercise might have made one thing okay, but dislocated 2-3 other things in the process. The only good thing they did was mild traction on my neck, which was AMAZING between surgeries for me. When I finally went back to the neurosurgeon and told him what PT exercises I was supposed to do he was horrified and told me never to do any of them again. 

My experience with EDS PT is basically just trying to solve the paradox of how to get muscles stronger without actually moving a single muscle :p Right now I live in a city with no therapists I trust, and the “best” one for EDS tried to internally decapitate me twice already. So I’m doing my own brand of PT which mostly consists of sitting on an exercise ball for 15 minutes 2-3x a day if tolerated (I sit in front of my fish tanks and watch them after I feed them, which works really well because they’re at the right height and eat for about 15 minutes,) isometrics for my neck (but against the wall or doors because I can’t hold my arms up well,) paying attention to posture, and having a general goal of being upright (standing, walking, or sitting) more than I am horizontal in any given week. 

There are also a couple good books on PT for hypermobility out there that I probably should read since I’m doing my own PT, but I haven’t bought them. Dr. Francomano told me to buy this one. I’ve seen people in support groups talk about this and this, and the Muldowney methods.

I recently saw a pain scale with the caption “if you can still talk, your not at a nine” and it really really bothered me. One of my doctors (who works extensively with teenagers with CRPS) said that one common theme he sees in his patients is a complete lack of reaction to pain. He told me that when he performs procedures and tests that are objectively extremely painful, often the teenagers will be smiling and cracking jokes, even though he knows that they are in excruciating pain. At nine I can carry on a conversation (not very well, because at this point things start to get really cloudy for me, but still a conversation). During my nerve conduction study (If you’ve ever had one you know how awful it is, and if you haven’t, it involves a six inch long eighteen gage needle stabbed deep into your muscles over and over while you clench and relax them as instructed.) i chatted with the nurse and played games on my phone. It wasn’t that I wasn’t in pain, it was just I was also outside of it. For teenagers with chronic pain a disassociation from themselves and their bodies is common, even expected. If I “grounded myself”, saw myself as In my body and of my body and nothing else I don’t know how I would survive. In order to live, to get out of bed or wash my hair or put on pants I have to separate ME from my body. It’s how I can pop my shoulder out of socket and put it back in during a conversation. It’s a matter of survival. And I’m tired of people saying that my pain isn’t real or valid because of it.

used to be I hated my body cause I thought it looked ugly, now I hate my body cause it’s the functional equivalent of a 1998 Honda Civic with 200,000 miles, questionable brakes, temperamental AC/heating, and terrible gas mileage that’s liable to break down at any moment in the middle of the fucking road. and the seats aren’t even comfy  

The problem with chronic illness is that no matter how badly you need or want a break, there is no way for you to get one. You can’t take a vacation and leave it behind like a stressful job or annoying family. You carry it with you and have to accommodate it every day for the rest of your life. And it’s so debilitating and exhausting knowing that you will never, ever get a break from it.

parents not believing their disabled child is actually disabled and forcing them to go beyond their limits is abuse.

parents calling their disabled kid a burden or a problem to them is abuse

parents using the disabled kids story to their advantage and making it more about themselves is abuse.

stop excusing abuse just because the victim is disabled.

Honestly a huge shoutout to everyone who had to stop doing what they love.

Shoutout to people who had to stop playing music and drawing because of arthritis.

Shoutout to people who loved to go hiking but can’t because of chronic fatigue.

Shoutout to everybody who’s ever had their health steal something they loved from them. Yall are so beautiful and worthwhile and I love you.

“You’re too young to be so sick!”

“You’re too young to be using a mobility aid!”

“Why do you rest so much? You’re so young!”

Originally posted by georgetakei

[gif: Hades from Disney’s Hercules saying “I know! I know. I know. I got it. I get the concept” while his hair flares from blue to red]
Reminder to Abled people

The “perks” disabled people receive are not perks to the disabled. They only seem like perks if you have full bodily function. They aren’t benefits at all, they are the minimum required effort to help disabled people and they barely cut it. 

Special seating is to fit a wheel chair, our butts and legs are in the same amount of space as you. We’re also cramped and uncomfortable and in pain, don’t be telling us how you have it worse. Most of those seats aren’t even in good spots in the theater. 

Special parking is so we can even access the store. The walk from the middle of the lot for you is the same as the walk/wheel from the front of the lot for us. Many of us can barely make it inside from the handicapped parking.

Boarding planes first is because it takes extra time to do everything, including get in and out of chairs. They do not want US to block YOU. This is for YOUR benefit. 

This also applies to the special lines at roller coasters- They do not want US to block YOU, the majority, from having a good time. Odds are a disabled person can only ride a few rides before having to go home (as well as many rides bar people with health conditions), few to no disabled people are using this line. It is a SAFETY precaution as well, because a disabled person cannot handle the strain of waiting in line in the heat as long as an abled person can. In fact, most abled people barely tolerate it. Why would you expect a disabled person to not pass out and need emergency services and halt the line if abled people do it, too?

Using the Elevator is not a privilege. How the hell are we supposed to get wheel chairs, damaged body parts, and our generous helping of pain up the stairs? If you think this is a benefit, pinch yourself immediately because you are dreaming. And yes, elevators often make disabled people with sensitive constitutions (most of us) feel ill. It’s not even pleasant. 

Being Granted extra time on tests is because many of our brains freeze up when placed in a stressful situation. It also often takes longer for us to remember or process a question or answer. If you have testing anxiety, you are eligible too! Do not think it is limited to disabled people and it is a benefit. It’s so we don’t fail every test. It’s so we can KEEP UP with you. 

“Getting” to take their dogs everywhere, is the most misconceived of them all. The dog is specially trained to preform a task so we do not DIE suddenly in public. Sure, the dogs are loyal friends, but I am not exaggerating when I say it is to prevent DEATH. Please understand the dog is for personal safety. Like a rescue inhaler or an alarm. Do not complain that you cannot have a dog in public and do not bother our dogs. You are downplaying our illness. It is both rude and cruel. Are you at risk of dying suddenly that could be easily preventable with an assistant? No? Then leave us and our service animals alone because it is none of your business. 

Please think about WHY disabled people need this rather than decry the whole system that barely supports us. I am sure you mean well, but if you think that these things are “perks” or “benefits”, then you are part of the problem. 

A large population of disabled people don’t even get access to all of these things because of the extremely harmful “faker for benefits” mindset that has been widely adapted. It is killing us. Literally. Please be considerate of the needs of all human beings, not just those like you.