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so i spent a day admitted, the went home after having some relief. then it all came back full force 12 hours later so im back in emergency. lol
on day 5 of a migraine get me out of here
im being referred to multiple new specialists and being put on multiple new medications im so exhausted and im sick of not getting any answers and only short term relief
gave up on home care and went to hospital on day 15 😭
on day 5 of a migraine get me out of here
i have so much art i need to get out of my brain its all stuck in there while i cant do any 😭😭😭😭😭
on day 5 of a migraine get me out of here
“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.
i have such a complicated relationship with the word “goals.”
i grew up constantly being asked what my goals or ambitions are for my life. i had answers when i was younger, id come up with different jobs all the time.
but as i got older - and sicker, i found it increasingly hard to feel encouraged by having goals.
it felt more like a weight that i wasnt able to carry, like i was carrying a massive burden on my back with everything going on in my life, and then i was expected to pretend like that burden wasnt there, and to jump up as high as everyone else who didnt have that burden.
as i continued to get sicker (to the point i had to leave school early) the questions of goals never stopped, and that was deeply confusing for me.
my goal was take care of myself, that was it. but that never seemed to be enough for people.
i would answer saying “im just trying to take care or myself and heal at the moment.” and they would ask me again, “but what are your life and career goals?”
why is taking care of myself not a good enough goal?
so now as i am in less of a crisis stage of life, im starting to open myself up to more “career and life goals.”
but thinking of goals is incredibly hard now.. i find myself feeling sick with anxiety thinking about even simple goals.. and i think im just really terrified of “failing” again and having to quit like i did with school.
i also feel like i have spent many years now trying to gain a healthy relationship with rest, with healing, with not being what society deems as “productive,” that i feel a bit uneasy about returning to more “productive” goals.
i dont want to lose what ive learnt over my time healing, i dont want to pressure myself too much to go back to being a “productive member of society.”
there are things i want to achieve in my life, of course there are. i dont lack motivation, in fact i have a really hard time having enough time and energy to do all the things im really eager to do.
its just that i have such a complicated relationship and past with the normal path that society wants people to take in life, im scared of losing myself, and failing in re-engaging in such things.
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 😭👍🏻
i find it interesting the overlap of c-ptsd symptoms with autistic traits.
i get asked all the time if im autistic. i even started questioning it myself just from how often this happened to me.
but while yes i have a lot of symptoms that are a part of many autistic peoples experiences, i wasnt always this way. i developed these symptoms throughout my childhood as i went through more and more trauma.
i remember when i wasnt sensitive to noise, light, etc. i remember when my social abilities were practically the same as my neurotypical peers. i remember when i never needed to carry stim toys everywhere i went. just to name a few.
anyways, i have so much in common with my autistic friends. while we arent the same, we get each other on a level that i havent found with many neurotypicals. ive also found that i often gravitate towards autistic people without meaning to.
i think its nice that we can find community where we didnt really expect it.
any other invisibly disabled people really struggle to use the disabled bathrooms 😭
if there is a queue i quite genuinely need to use it, but when other people leave the queue for the regular ones to use the disabled i have no idea if they are also invisibly disabled so i never like, interrupt and say i need it yk djshjd
i do wear my sunflower lanyard but random people in bathroom queues rarely know what that means
just pls if ur able bodied i understand it may be annoying to wait in the queue but if you dont need the disabled bathroom pls dont use it
idk its just a hard situation to navigate for me fnkdn
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.
what if i only drew disabled characters forever lmfao
fanart? yeah but theyre all disabled now.
oc? yeah theyre all disabled too.
oh youre sick of seeing disabled characters?? too bad im sick of not seeing any.
gonna fucking roll a dice of disabilities for every drawing out of spite. :)
why arent more able bodied people fighting for disability advocacy?
see disabled people as humans, as peers, as equals.
we deserve access to everything you do. we deserve the chance to have a happy and comfortable life just as you do.
dont push us out of sight and out of mind.
we do not deserve that. we are equals.
its okay to mourn.
its okay to mourn the childhood you could’ve had.
its okay to mourn the career you could’ve had.
its okay to mourn the children you could’ve had.
its okay to mourn the education you could’ve had.
its okay to mourn the friendships and social life you could’ve had.
its okay to mourn the hobbies you could’ve had.
its okay to mourn the travel you could’ve had.
its okay to mourn the life you could’ve had.
nobody gets to tell you that you need to cheer up.
alright lets get this out of the way.
school bathrooms should be unlocked during school ALWAYS
school children should be allowed to go to the bathroom ALWAYS
school children should NEVER have to ask to go to the bathroom, just tell the teacher that they need to go
schools should NEVER question a child on why they need the bathroom
schools should NEVER make jokes about how often a child uses the bathroom
schools should NEVER get angry at children for using the bathroom
NEVER should a teacher approach a child about their bathroom usage.
if there is a concern or problem with a childs use of the bathrooms, the school should speak to their parent or have a meeting involving the parents and the principle.
if there is misuse of the bathrooms, the school should speak to their parent or have a meeting involving the parents and the principle.
you never know what children could be dealing with, whether they have bladder issues, gi issues, mental health issues or other disabilities. some children may be using the bathroom to hide from bullies, or they may have addiction issues.
it doesnt matter. its shouldnt be the teachers job to police toilet usage. only when there is an issue should limits or supervision be put in place, AFTER meeting with their parents and potentially the student to figure out the reasons for such issues.
i know this is really controversial but im really sick of horror stories from kids like me who dealt with the shit that is school bathrooms
i hate how my illnesses can change how im seen as a person - like because im sick i cant do a lot of things and it makes me seem flaky but i want to be there i just cant