Howdy kind Mastonauts! 😁 Welcome to this new account.
I made (another) account to share things that are not health or entertainment related. I have dedicated accounts for those things (links in bio).
I will boost those toots when I feel them "good enough" to share with you.
Today I quit physical therapy and I'll see whenever I get enough courage and optimism back to search for a new one.
I recently got an injury I couldn't solve myself, so I searched help from a PT. The first one I got helped decently with this injury caused by #hypermobility, even though she didn't understand #MEcfs and all that comes with it.
After a few appointments she went on long sick leave (looks like long covid) and I got a replacement PT. The new PT didn't understand ME or my injury. She talked to me like I was a child and constantly said muscles and joints were supposed to hurt, invalidating my pain. I went twice and cancelled my other appointments, not wanting to go back.
The replacement PT started working less (looks like long covid) and a second replacement PT showed up. I had one appointment with her. She didn't understand ME, hypermobility or my injury. She kept telling me that I shouldn't be so scared of pain (I'm not) and that I shouldn't avoid movement (I don't). She accused me of lying when I told her I'm as active as I can be. Even when I explained I know the difference between good pain in muscles that are healing, and pain of something going really wrong in your body, she never listened to me. She said it's all in the mind and that I should just distract myself. She said that I should just exercise and I will be well again.
She refused to listen to my boundaries and physically pushed my hip with the injury into a painful position, worsening it in the process. I told her to stop and she took it as evidence that I'm a pain avoider. I've been to plenty of extremely painful PT sessions and I know that some types of pain are for my own good, but man, this definitely wasn't it. This was extremely misinformed treatment that actually harms patients. I am never going back.
I feel hurt, upset, and humiliated, even though I've had encounters like these dozens of times already! You never truly get used to it. ME/cfs and hypermobility often aren't taken seriously. But, it also didn't help that I was wearing a mask to avoid #covid and that I was immediately perceived as a hypochondriac. I didn't even stand a chance at being taken seriously.
Wearing a mask is such a disadvantage in healthcare now. I have several other illnesses that are generally recognized and not as contested as #MyalgicEncephalomyelitis. However, since mask mandates ended in healthcare settings half a year ago here, doctors have slowly started to approach these illnesses with doubt and skepticism too, because I refuse to unmask. It's starting to get more difficult for me to get my regular prescriptions.
I genuinely fear for my future and quality of life, if more and more care becomes inaccessible, both because of #covid19 infection risk and because of the way healthcare workers now treat people who try to avoid infection. This is starting to become the norm.
Speaking of Bi things... I'm currently using an extra dining chair in my office, which is killing my back and makes my legs sad. I think I'm finally going to treat myself to this gloriously queer office chair.
A question for people with Ehlers-Danlos. How the hell do you swim? I've never been much of a swimmer at all but I'm making an effort to improve. I am desperately trying to keep my legs straight and hips moving, but my lower body has its own agenda. Any tips would be greatly appreciated!
At the recommendation of one of my #hypermobility support groups, I’ve started doing median nerve flossing exercises twice daily, and they really seem to be helping with my neck/shoulder pain. Passing the video I used in case it is helpful to any of my #ChronicPain friends on here:
Chatting with my son earlier and I said something before it clicked with me. He was curious why I didn't go to a shop that I volved a walk and hills. I'd also planned some fun activities to do with the kids. As well as having a high #pain day today I've also got another badly infected toe (I'm phoning the GP on Tuesday) so I told him I was choosing my pain, and I realised that's what we do when we live with #ChronicPain#arthritis#hypermobility#Scoliosis#fibromyalgia#ChronicFatigue
Do you, or anyone you know have #EDS or #hEDS otherwise known as #hypermobility? How many more hashtags would you like? I know, #ehlersdanlossyndrome
Well let's face it, if you have it, then at least half the rest of your family has it too, amIright?
If you live in the UK, Ehlers-danlos.org is doing a govt petition (ie: one that might actually get some traction) to get us all some more research grants n'stuff because... what, up to 25% of the population, eh? The great big invisible elephant.
There's a twist, which is: separate petitions for Eng, Scotland and Wales. Look, they'll explain it when you get there, just click on the below, and get signing: