ID:
"Me: *stands up really fast*
My entire body:"
Bellow are 12 different engine warning lights that you would have on a car dashboard.
Me waking up for the 40th time during the night because my toddler has RSV
this post was submitted on 12 Feb 2025
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Chronic Illness
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A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.
This is a support group, not a place for people to spout their opinions on disability.
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Be excellent to each other
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Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc
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No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.
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No denialism or minimisation This applies challenges faced by chronically ill people.
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No psychosomatising psychosomatisation is a tool used by insurance companies and governments to blame physical illnesses on mental problems, and thereby saving money by not paying benefits. There is no concrete proof psychosomatic or functional disease exists with the vast majority of historical diagnoses turning out to be biomedical illnesses medicine has not discovered yet. Psychosomatics is rooted in misogyny, and consisted up until very recently of blaming women’s health complaints on “hysteria”.
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Waiting for all the new warning lights to turn off until only the ten normal warning lights are left.
Accurate 😭
That's called orthostatic hypotension.
Bad enough, it can make you completely lose consciousness, which generally causes bad things when it happens standing.
In mine, and other cases here I'm sure, it's called "a collection of chronic illnesses that cause an enormous amount of pain and other symptoms, that flare up every time you move", but that's good to know anyway, thanks!
Not only. It’s called Orthostatic Intolerance.
Which can be a bunch of things, so only a subset of cases include hypotension.
See: Post-Orthostatic Tatychardia Syndrome (POTS) for example.
I'm pretty sure POTS stands for Postural Orthostatic Tachycardia Syndrome.
Yep sorry I always mix up the acronym.
Post-orthostatic (after standing up) vs Postural Orthostatic (when standing up in an upright posture) sometimes get mixed in my foggy brain.
my Gen-X ass every time I move thanks to 40+ years of skateboarding, surfing, snowboarding, and all around jackass worthy antics
Rugby and combat sports (judo, wrestling, muay thai, mma) did a real number on my joints.
I think I can directly attribute to scrums my enduring neck pains
PT actually does wonders for this….
start now before it’s too late
I do some PT by myself, mostly stretching and muscular reinforcement exercises. It indeed does wonders and that's solid advice.
Alas I seem to have some underlying issue that manifests itself with joint hypermobility, joint pains, and muscle contractions that can last for hours on end.
I don't know what it is and should probably get it checked at some point but doctors are scary and all.
Ketoprofen (a stronger version of Ibuprofen) works ok on the pains/contractions.
well i suggest you see a doc and real physical therapist… but, i wish you luck.
(also ive experienced a wide range of physical therapists… definitely make sure you vibe and they care).
I know I should.
I even live in France where we have a pretty good healthcare system (very commie but the neolibs are trying to sell it piece by piece).
But still navigating healthcare as an autistic, trans, and handicapped lass is pretty scary and rough.
sorry to hear….
for me it’s:
go to primary care physician (main doc), tell of pains and ask for referral, then go to the PT place they referred me to….
but don’t worry, musk will be deleting my healthcare soon….
(btw, probably good to write out a list to tell the doctor, because i always forget when im actually talking to them… ).
also, if you’re french why do you call yourself a “lass”?
seems like you mixed up Irish and French…
Afaik lad/lass is more used in Scotland/Northern Ireland than Ireland.
I like slangs in foreign languages. Not being a native speaker lets me chose which ones I like and want to use.
There might be some exposure bias too. I've got a halfway decent accent but it sounds like the weirdest lovechild between Southern Scotland and US midwestern :p
Healthcare wise I got a great endocrinologist and psychiatrist but alas no primary care physician. I dread meeting new doctors because I often feel like they don't listen to me.
Almost every first appointment is "could it be related to your HRT" whatever I come for. Migraines? HRT! Psoriasis? HRT! Injured? believe it or not: HRT!
Specifically for pains I get so much "it must be your posture" and "probably psychosomatic". Yeah sure the posture of sleeping straight on my back on a good mattress. Also ofc stress plays into it but could you please search a bit further into it? :c
Sorry for the rant ^^`
no, i can relate… last time i went to the doc he was interested in what i was there for, and tried to be my unlicensed therapist… literally, not figuratively, he wanted to have therapy sessions….
my psychiatrist thought that was a bad idea for a number of reasons….
(and now my next argument with a troll will bring this up).
actually i was in there for some back pain and some other stuff and he was disinterested, but did refer me to PT….
he had started therapy himself, due to an existential crisis dealing with covid and trump as a doctor…
i know what it’s like to have some social anxiety, and a specific phobia of doctors and hospitals (childhood stuff)… but it’s worth it because they have some very counterintuitive exercises to target specific areas that are worth learning….
maybe start with some history of injury that led to the pain before talking about it?
i’ve found it’s useful to mention i don’t want pain medication and will refuse it, because they like to assume weird people are drug addicts when they talk about pain.
I have at least two dents in my skull due to bashing my head after a "get up/lights out" event.
Fancy!
Sorry, in all seriousness that really sucks, sending you a friendly internet hug.
Thanks c:
It was kinda annoying but I got real good at sitting in a split second.
I naturally have a very low blood pressure which are compounded by eating disorders and some medication I used to take. I switched meds and it's almost in the past now \o
I have some similar issues, so I can relate, except for the sitting (or standing) fast, since my joints just won't let me 😭
Great that changing meds helped so noticeably!
Oof. Joints are like teeth. You value them when you lose them.
Mine have been pretty much fucked since birth, so I always knew they'd eventually completely betray me lol 😭
- DANGER: Shakey
- WARNING: Heart pump needs servicing
- DANGER: Electrolytes depleted
- WARNING: Dizzy
- WARNING: Wobbly
- WARNING: Hungry
- Foot rotation: OK
- DANGER: Hypothermia
- DANGER: Tunnel vision
- WARNING: Flatulence
- DANGER: Ball to the face
- WARNING: Bad luck
DANGER: Ball to the face
🤣🤣🤣
I was actually trying to think up a similar list but was too tired, thank you so much, these are brilliant! 😂
Is your blood pressure ok?
the bottom right indicator light means youre hungry or you ate something bad. not sure what the other symbols mean though