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Wahoo!
I decided I felt okay enough to change my bedsheets by myself—so I did! And I was right, and I feel not awful afterwards!
I only have a little bit of a headache, and I’m only a little sweaty, and my heart is only racing a little bit. I count it as a win!
possibly cah with definite obvious autism culture is realizing you can outfox your normally pretty moderate exercise intolerance if you enjoy an activity, but there's not much exercise you ENJOY aside from going to cons and walking and doing stuff for 3 hours
(Questioning) CAH + Autism culture is...
I think the most annoying thing about having exercise intolerance and POTS is that i can't enjoy music the same way anymore. I'm not even talking about anything like dancing but moving to music while sitting down and also singing? Pulse go whoo and ta da i've collapsed! So mean.
Me: Okay, I need to be a little gentler with my PT exercises.
Brain: But why? Your asthma’s behaving, you haven’t hurt yourself, and you haven’t even broken a sweat!
Me: Dude, I’m itchy.
Brain: Only a little! Other than that, it actually feels good, right? Keep going!
Me: Friend, aren’t you forgetting about something?
Brain:
Brain: Are they behind me?
MCAS: Hi! 😇
Brain: AHHH!
Me: I’m already relaxing and having some water. You can go now.
MCAS: …
Me: I banish you with a dose of rescue meds. Put down the exercise induced anaphylaxis and be gone!
MCAS: Fine. 👿
I'm so confused and I think the idea of deconditioning has gotten out of hand.
I've read online that deconditioning usually happens when a person has been bedbound and not able to move for an extended period of time. I have IST which does admittedly share symptoms of deconditioning. But I've been exercising in some way my whole life and still can walk around my house, with symptoms this whole time. I have tried and failed my whole life to decrease my exercise intolerance. I'm still at the same level of exercise intolerance I was 22 years ago. And there's no anything out there for "failure to decrease exercise intolerance".
I've also heard the whole "Cure Dysautonomia with exercise" has been debunked to an extent because the patients were astronauts returning from space and didn't also have a dysfunctioning autonomic nervous system. I know exercise helps some people, this post is for the ones it doesn't help. I'm just tired of feeling like I can't be heard because no one, including doctors, want to believe I have genuinely tried exercise so much growing up. I always stayed at the same level of symptoms no matter how much or how little exercise I've done. If my exercise is doing my Activities of Daily living (ADLs) and technically aren't exercise, so be it.
any tips on doctors who just try to push physical therapy on you?
i have chronic muscle pain (hips + knees) and have already done 4 months of pt for supposed pfps (turns out i don’t have it) and it did absolutely nothing to help with any of my pain (i did a lot of stuff for strengthening muscles around my hips). i told the doctor that exercise doesn’t help and that i’m in pain the whole time and they didn’t care
god i’m so sorry you’re dealing with that, myself & tons of others have been through this experience & i so wish i had better answers for you. unfortunately as far as i can tell you’re at a juncture where your decision is basically whether to become a “noncompliant patient” or not –
you can try doing what the doctor suggests & continue putting yourself in pain through physical therapy with the hope that eventually the doctor or physical therapist will be like okay this is doing fuck all let’s try something else
if you’re in a position where this is an option, you can go to a different doctor, but they might just do the same thing
you can keep going to this doctor without continuing pt, with the knowledge that they’ll probably label you noncompliant & will likely treat you more like shit
i wish so badly that there was a certain response that would make them respect you, it’s a shitshow & a crapshoot & you don’t deserve this. you shouldn’t have to put yourself in more pain to receive healthcare & i’m so sorry the system is so fucked. it is always okay to stop going to physical therapy if that’s the decision you want to make, i wish it didn’t carry so many potential punitive consequences from physicians who think their word is god.
the best resources i can suggest are around resisting medical gaslighting; community support + experiences + theory around both noncompliance & exercise intolerance have been very affirming for me wrt like, i’m not making this up. it can also be helpful to journal or whatever to document how you remember your symptoms being worse after exercise, pt, etc so that if later you’re doubting you were “actually” in worse pain you can read back over your experiences.
the mindset that’s also been helpful for me is that even if pt would help, it’s okay not to do it. i don’t owe anyone an able (or less disabled) body, & not exercising doesn’t mean i deserve medical neglect; no one deserves to be in pain even if they’ve “brought it on themselves.”
again i am so fucking sorry. your pain is real, in the vast majority of cases if pt was gonna help there would’ve at least been some sort of improvement in 4 months, & so much current medical science including around physical therapy is rooted in ableist misconceptions. you deserve further testing & pain relief no matter the cause of your pain (or whether that can even be determined). my heart goes out to you & i can’t always respond quickly but feel free to talk about this more if you need to 💖💖
Fuck heat intolerance and exercise intolerance. I cant fucking sit without sweating my ass off and having a high heart rate, and when I just walk i end up dripping and with an extremely high heart rate. The fuck is up with that shit.
Me, yesterday: Well my hips and legs are really painful, but at least my neurological stuff is mostly fine, I can manage like this 😅
Today:
Vertigo: Sorry I'm late 🙂
