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anyone who thinks health issues end with walking out of the hospital doors, massive reality check for ya. there is no clocking out of chronic illness or disability.
surgery does not cure everything, medication does not cure everything. hospital cannot cure everything.
the amount of people in my life who believe that when i go to hospital, i will be discharged cured or symptom free is astonishing to me.
most of these people have known me long enough to have seen me through multiple hospital admissions and every time they come back to this way of thinking even though its never happened.
one of the worst parts for me about chronic illness is not having answers.
im a very logical and analytical person i love things to make sense i love patterns and reasons.
i have answers for pats of my health, and im so grateful for that, but the parts that i dont have answers for haunt me.
i think about it all the time. what if its not real and thats why theres no answer? what if im not explaining my symptoms right and thats why i havent had the right test that would give me the right answer.
i know logically that its a waste of time to think about, but i cant help it, i obsess over it. not understanding the world is one thing, but not understanding my own body? my own life? thats what gets me.
notalgia is so strange because what do u mean i long for things that remind me of the worst times of my life?
“consistency is key” doesn’t apply to many disabled people.
going to the doctor and having them tell me that, and that i need to stick to a schedule they have deemed appropriate is completely comedic.
what about the fact that my health and ability to do anything is a constant gamble? it can change drastically and almost instantly at any given time.
what about how right now i can stand up and make myself breakfast, but by lunch time? who knows. i may be unable to even sit up.
how do u listen to me explain that i dont have a daily or weekly schedule because of how unpredictable my health is, and reply by giving me a schedule.
do you not think i have tried to stick to a routine and schedule like all the healthy people around me??
all i see is people with consistency. i grew up thinking i was broken because i couldnt. i have pushed myself to breaking points trying to fit your mould of success and health.
im sorry if you experience this too. im going to make another post about what consistency can look like for me and other disabled people. because while we dont fit the classic definition of it, there are ways we can make our own version. i wish doctors would listen to me and would help me find my version instead of insisting on theirs, but they havent, so i wanna try help others find theirs. prt. 2 here (now going to make multiple more posts on this topic lol)
being a disabled environmentalist is hard.
i care so much and i wish i could aim for things like zero waste. but i just cant, doing something like that would be ignoring my health needs.
its quite isolating, because i try to find tips and environmental swaps but often they just arent possible for me to use/do and then i feel guilty for that.
even though i know its not my fault and i cant help it, it just triggers my inner ableism and i blame myself for being this way.
one of my health issues thats been stable for around 8 years is suddenly worsening the past month and it makes me so scared that i might have to go through the procedure that was the worst day of my life again 😭👍🏻