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i am constantly worried that my unpredictable health will lose me all my friends. you might say thats irrational, but it has already happened to me twice.
i have been called flakey, unreliable, a downer and probably more i havent heard. and i cant help but wonder, if the world around me was accessible, would i be any of those things?
the lengths i go to for relationships never feels flaky or unreliable to me. but maybe to other people it doesnt matter why i cant show up sometimes. maybe all that matters to them is a yes or no are they here with no context.
try be accessible and lenient with your disabled friends please..
kinda proving my own point by posting about consistency and then getting really sick and going to hospital jfhdkd
“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.
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 dont know what it is anymore its day 14 and its still the same im losing it
on day 5 of a migraine get me out of here
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 😭👍🏻
and what i really want is more deformed characters who are GOOD instead of this awful pattern of the deformed characters being evil.
anyways i am currently working on multiple such characters.
Really wish I saw more art of deformed characters. More diversity in bodies. I feel like people are scared to draw us because they’re worried they’ll do it wrong or something. But 1. wrong and trying is better than nothing, and 2. you can always ask somebody for input. There are always people who are willing to answer your questions, you just have to find them. My asks are always open and I know a to of other people who are like that, too.
exactly 😭😭 its always like “aw im so sorry i get it ive been through the same” and then ur like ah shit not another one.. :((
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.
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. :)
physically disabled people who are also fat deserve mobility aids just as much as physically disabled people who are skinny.
we also deserve to have mobility aids that fit us, we shouldn’t have to settle for ones that don’t meet our needs. whether it’s having a high enough weight limit or being wide enough or being sturdy enough, we deserve that.
it doesn’t even matter whether a person is fat because of their disability/ies or if they’re disabled because they’re fat. that person still deserve good mobility aids that meet their needs.
[this is a post about fatness and physical disability, derail and i will steal your mail for three months and two days]
Shout out to people who use adult diapers
Shout out to people who have chronic UTI
Shout out to people who have catheters
Shout out to people who have urostomys
Shout out to people who still wet the bed
Shout out to people with kidney scarring
Shout out to people who deal with kidney stones
Shout out to people with kidney cancer
Shout out to people with kidney failure
Shout out to people who I didn’t mention but still have kidney/urinary tract issues
I love you, I know it sucks, the judgement sucks, the symptoms suck. You’re not gross, it’s okay to talk about it. Your suffering isn’t taboo, never let anyone treat you like it is.
getting the cancer response is particularly funny for me.
i had cancer. thats what made me chronically ill.
telling people that seems to blow their minds.
theyre like no but cancer is the worst and you dont have that now but you had it before so youve had both cancer and being chronically ill but like cancer is worse and-
they dont know what to do with that. they tried to make a smart comment and it failed miserably. its funny to me. (i have to laugh or ill cry)
Telling a chronically ill person "at least its not cancer"
Or someone who's disabled due to a tragic accident "it could've been worse it could've disabled you more"
Or anything along the lines of "you could be dead or more disabled be greatful" I hope you rot in a hole where everyone you ever loved forgets you ever existed and you have to sit with that like in coco where you disappear when you're forgotten because that is so insanely rude and even more disgusting and if you don't know how to talk about disabilities without trying to "look on the bright side" or try and cheer people up about it maybe you shouldn't talk about them because some disabilities just are and they're always going to be and there's nothing anyone can do about it
And if someone is dying from their condition but its taking years instead of being fast like tv and stuff portrays it pls for the love of God don't tell them they "aren't dying fast enough" or "weren't you dying last year"
This post is specifically in reference to all the horrible comments able bodied people leave on disabled ppls social media's where the person shares their experiences
no because it just absolutely enrages me when people consider themselves a “freedom fighter” or an “activist” or whatever the fuck you wanna call it.
but then they dont apply that to all minorities.
why is one minority less worthy than the other?
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.
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.
i had the same experience when i had to use the elevators.
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
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
whens the update that fixes the multiple chronic illnesses bug 😔
I truly think the human body should have some kind of source code that prevents a person from developing more than one chronic illness and/or mental illness
I can handle one (1) at a time but when all of them are flaring up at the same time? That's a great way to push me into a breakdown of despair.
Like my legs and back and neck and shoulders hurt badly today, my narcolepsy has me exhausted and brain-foggy but I'm in too much pain to sleep, and I've got the symptoms I get a few hours before a migraine develops. And I don't have meds for ANY of these things anymore because of many reasons simplified down to: most of my doctors don't listen to me and the ones that do are now a 2 hour drive away.
And I've been on the verge of tears for days which has me suspecting my period is right around the corner and I swear to god if I get my typical endometriosis-excruciating-pain-cramps on top of EVERYTHING ELSE today, I might hurt myself or someone else. I'm at my fucking limit.
And I want to cry to like, "honor my feelings" (can't think of a better way to put it), but crying will make my migraine come on faster and make my muscles hurt worse so I'm just stuck here.
please please please allow yourself to try aids and adaptations. it’s not giving up but working with your mind body and being kind to yourself. it isn’t the tragedy that society mistakenly think it is. i’m proud of everyone who tries to find easier ways to exist 💜
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
i hate how people don’t understand the difference between having no motivation, and having the motivation but being physically UNABLE to do it.
trust me when i say i wish i was not ill and could just “go get a job.”