Hello everyone, I’ll be hosting the megathread while un_mask_me is out.
I completely forgot I had to post it until just now.
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“Disability” is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.
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i fucking hate the american medical system
might edit this and go on a rant, might not
edit: rant
so after getting our recent POTS diagnosis they… gave us physical therapy? not sure how exercise is going to help any of the symptoms of pots, or our worsening pain and fatigue, but okay.
we go and realize that this is just… something to condition and gaslight disabled people into thinking that yoga, exercising, and breathing exercises are gonna magically fix their chronic illness. they specifically encourage you to not take breaks and maintain doing all this stuff every single day to and specifically encouraging them to not take breaks and to maintain the same constant activity level to “recondition your autonomic nervous system”, which is definitely how that works. not taking breaks never hurt anybody ever, nope. oh yeah and if you start having symptoms make sure to do these breathing exercises thatll totally do something.
this just seems like a ploy to make disabled people blame themselves for not magically being better, because constantly exercising every single day will totally make me less disabled. “oh its not working? well thats your fault! try harder”. cant wait for them to start saying “theres nothing we can do and we are going to forcibly euthanize you”.
forgot to add that i have another unknown chronic illness, and depending on what it is doing literally any of this could be completely terrible for me.
oh and when our lung collapsed last year they literally told us to “walk it off” and that “it would heal on its own”. (it didnt, we had to have major surgery)
A few thoughts on your rant
First of all, I’m sorry you have to deal with this system, especially with your chronic illnesses. While yoga and the likes can help with some conditions, they’re not a miracle you can just keep doing. Whatever they were thinking about when prescribing the physical therapy, it’s not your well-being.
Okay, and what the actual fuck is wrong with these people??? Angry on your behalf, you deserve better.
Is there any way you can get a second opinion or see another doctor? Anything the medical shitshow allows you to do?
this is a relatively good resource for living with pots
Your doctor is being neglectful by only suggesting exercise. Many people with POTS also have other health conditions that might get worse with exercise (like ME/CFS).
The 3 main things other than exercise that can possibly relieve symptoms are:
Thigh high compression socks that push your blood to your upper body. Knee high aren’t as effective but often a lot cheaper so could still be worth a try.
Taking 8 grams of salt per day combined with drinking at least 2,5 liter water to increase your blood volume.
Very low dose beta blockers that slow down your heart rate. If you have low blood pressure then you should be careful with using beta blockers.
These solutions all don’t work for everyone but there’s usually at least one that helps relieve symptoms. The salt thing is obviously the cheapest and most accessible. If exercise doesn’t make you feel worse then I’d still try it but on the website I linked it suggests to start really slowly and work your way up. Taking rest days should really not be an issue and might even be better for you.
yea my mum has ME/CFS, no thankies x3 currently looking into a possible *EDS diagnosis, but theres sooo many EDS variations
im aware of most of this (and put a fair amount of it into practice), but thank you!!! just wanted to complain about the medical system from the viewpoint of “i know this isnt what should be happening”
Sorry if this was unwelcome unsolicited advice (I never know if I’m guilty of that but I’d like to know if I am!) I any case I understand the struggle with horrible medical systems and I think you’re right that doctors try to point to something to make it seem like it’s your fault that you’re struggling because they can’t do their job properly.
it was welcome advice, promise