Healthy Coping Looks Different For Everyone Right, But I Really Wish It Was Easier To Figure Out What

YES YES YES. it is incredibly hard to understand our own bodies and feelings.

this is why we need doctors to really educate themselves by taking the time to listen to us and learn from us. a standard medical textbook isnt going to explain the medically complex to you, only working with medically complex people themselves can.

“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)

this is officially my longest migraine. day 28.

i am beyond sick of this. mentally struggling with how reliant on my carer i have to be during migraines.

i can handle it when its only a few days but this long is a whole other world. i dont experience this level of dependance that often so im not really used to it still.

on day 5 of a migraine get me out of here

never stop deal with this so this your periodic reminder that

⬇️

!! if you see someone write different online. unless they explicitly tell you something different. leave them alone. don’t comment on their write. don’t do anything unprompted to “help” without ask. it rude annoying we heard it million times promise. !!

⬆️

some people with language disorders. agrammatism. cognitive struggles. or write with symbol base AAC that not support grammar inflections.

yes we will sometimes write different than you use to.

yes it not “correct grammar,” you so observant (sarcasm).

no it not for fun, no it not choice, no it not writing quirk.

whatever you want say, we probably heard it million times. yes even if it friendly joke - n we appreciate you friendly. but please

great that it “actually help you read/understand better than full grammar.” some people may like you tell them that. but personally not want hear it too - my way write my disability, it about me n it not on purpose it out of my control. would rather you talk about how way break down concept (something can actually control n try really hard at) as easy understand.

“this just gave stroke/seizure/whatever ‘funny’ ‘edgy’ disability” joke. not that anyone make it would listen but. shut up. it not funny to me it not funny to stroke survivors or to seizure havers.

decide stop apologize for exist if it hard read. even if you have receptive language / comprehension / reading / cognitive / etc disability - it unfortunate but conflicting accessibility exist. (yes, do understand actually, because speak from experience.)

if you want know what am say please at least put in some effort to read it.

if after genuine try, still struggle, do what you do when you see tumblr post in “perfect grammar” you don’t understand - polite ask for explain or rephrase or summarize.

it still english, or whatever language person use. unless you actual look for it be turn different language, it still english, no you not need “translate.” (no don’t care that “translate” okay in writing quirk community because again. not writing quirk)

not “fix.”

and. understand sometimes we can’t rephrase in different way, even if that different way include still write different.

personally am allow other people answer “can you rephrase” questions without go through me first, for now, because of this. - but understand this is reluctant compromise. because:

understand sometimes we still sensitive to other people rewrite explain in perfect grammar. because have long history of people refuse put effort in read our stuff but instead always give more attention to people who write perfect, even if their writing not any less complicated than ours. because have long history of be charity case n get unsolicit “help” “translate” when we never ask.

because have long history of be forcibly spoken for n be misunderstood. because people who answer may (& many times do) get it wrong & we then have to spend more effort chase down n correct when we already struggle with communication, n that other version always spread faster than our correction.

so know other people who write different, don’t allow people rephrase at all unless go through them first. please also respect that even if inconvenient.

n on that note.

unless we give you explicit permission to you (like “you specifically can do it” or like above “can do it if someone ask,” or “anyone can do it all times”). don’t. don’t rewrite what we write into correct grammar, into perfect grammar.

don’t give random disabled person unsolicited help. it not friendly it not helpful it rude n annoying. not your charity case. who even are you. no one asked.

none. of. your. business.

not need your fix. get off moral high ground.

n like everything. there some jokes n comments that *some* people who write different may be okay with if they friend with that person make it - sometimes opposite of what this post say. if you not friend with that person then. maybe don’t.

people who write different not all same. sometimes okay or not okay with different things. but. this general see.

the first time you hear about [stuff am tell you in post] probably 456737th time we re-explain it. excuse us for be exhausted n done n our time be tired n angry n impatient.

this been a PSA.

this i always feel like theres basically two versions of “cant” because sometimes people say cant and they dont actually mean that.. they just mean its hard. and then they assume i also mean its just hard.

it genuinely so. so. no even have word for it. so profoundly exhausting that anytime any disabled person talk about can’t do something—full, wholeheartedly can’t, absolutely can’t, under no circumstance can, if no one help them or do it for them it not get done n they suffer whatever consequence include dying—that it always get FLOOD by so so many “same it SO hard for me but no one help so have to force do by self” n “am i? actually? not low support needs? because all these stuff u talk about so hard for me too n no one recognize it so have do it by self :(“ like you all not get it n not even know you not get it n not sure you all even capable of get it, n, ironically this time do mean, that genuinely, absolutely, no matter what happen, can’t

i LOVE lizzies relationships with her parents she loves them so much.

Fact #29:

Lizzie Hearts has a close relationship with her father.

Source: The Book.

it hurts hearing other disabled people talk about medical mistreatment.

like i am partly grateful to not be alone of course, but i really wish it wasnt a common or even standard occurrence.

breaks my heart.

yes! ive definitely seen that hypermobility trick thing

disabled people!!!

what are some illnesses/disabilities that youve never seen representation for and would love to see?

let me know in replies reblogs asks messages whatever suits you :3

i really want to reapproach the way i see success.

i think ive slowly been doing it for a few years now, but theres definitely more i can do.

i always think of it in the grand life goal kind of way.

but it doesnt need to be that..

and for me, i really wanna see if i can find things in my day-to-day life that are, a success.

did i put myself out of my comfort zone that day trying something new?

did i take a deep breath and calm my thoughts before getting frustrated at somebody?

did i show care to myself even when i felt unworthy of life?

did i do anything where if i was reading a book about me. would i be proud of the bee on that page?

because the answer is probably yes most days. but im not treating myself as if thats the case.

im so harsh to myself and i know this. i give grace to others where i would never for myself.

i just want to treat myself gently.

so cheers to small successes, the steps forward even when theres also steps backward..

and to not just treating others the way we want to be treated, but treating ourselves that way too.

you naturally grow out of a lot of unhealthy habits and I think that something that seeing obsessive self improvement culture in the early twenties crowd makes me sad about like. you will start to drink less as your world changes, you will get better at habits as your world stabilizes. your sense of self will solidify as you make mistakes waste time and figure out what works for you and what does not thru your own bodies rejection of it. you’ll be called to sleep earlier and wake sooner and to move your body bc it won’t bounce back with out stretching it out first like there are reasons older people are more regimented bc they don’t need to experiment as much anymore to find out what’s functional. It’s not 1 size fits all

oh fuck yes.

kind of deeply obsessed with the idea of everyone thinking helia is kind of a dick. like not riven-levels of asshole but most people find him off-putting and hard to get along with by virtue of him being such an intense person. and he’s the kind of person who does things to the beat of his own drum. he’s very one track minded in that way and it makes it hard for others to collaborate with him and find him agreeable on a surface-level capacity. even still people find him likable but in a more distant, unattainable way. but anyone who spends time with him one-on-one and has a conversation with him realizes that he’s actually super non-judgmental and easy to talk to. and he really does like connecting with people, he just doesn’t go out of his way to spend his time on things that don’t catch his attention. and he’s honestly just super sweet.

in contrast, flora is affable and beloved and on average treats people so kindly and sweetly. so everyone’s impression of flora is that she’s a gentle and sweet person who rarely has a bad thing to say about anyone. and while this is partially true, she oftentimes has her private reservations about people that she only truly feels comfortable voicing with her close friends (ie the winx) but won't ever hide from anyone if directly confronted. her natural sociability makes it so that she's very easy to get along with and collaborate with, but people often underestimate her sharp judgment of character and tend to reduce her to her gentleness when she's much more strong-willed than she comes across.

& when helia and flora get together, it's the coupling of two people who are more understated on the surface but actually quite intense to their core. they match each other's freaks <3