Chronically Ill - Blog Posts

reminder that productivity doesnt equal worth because i am forgetting this at the moment

I MISS MY HOBBIES 😭😭😭😭😭

im on day 39 of a migraine, hospital have given up on me, makes it hard to not give up on myself.

people dont understand the boredom of being disabled.

i see a lot of people suggest to people to embrace boredom and creativity will come from it. that to improve your attention span and get your life back from the trap that is quick form media you need to be bored more.

but i dont think that is the case for many disabled people.

its not the case for me.

i am SO bored. EVERY day. i cannot do all the things i want to engage in. i cannot play games i cannot read i cannot do art i cannot bake. these things arent being stopped by a social media addiction, they are being stopped by my health.

and my attention span isnt struggling for the same reasons as many abled people. mine struggles because of my symptoms. my fatigue, my pain, they are distracting and fog my brain.

so disabled people, when youre looking for tips about how to improve your attention span, and engage in your hobbies more, keep in mind that the reason for your struggles may be completely different to the people who are sharing suggestions and tips on the topic.

THIS its so important to understand that while yes absolutely we need support and funding for sick kids - these same kids will likely still be sick as young adults and need support then too.

I feel like people forget that pediatric illnesses generally last into adulthood like…childhood cancer survivors often have medical complications for the rest of their (adult) lives. My juvenile arthritis will be around when I’m 75. Crohn’s disease, cystic fibrosis, congenital heart defects - all of these things, when acquired in childhood, have lifelong complications. Childhood diseases aren’t just cute, happy kids smiling from hospital beds. Theyre pain and suffering and learning to live differently forever.

i want my life back fuck being ill.

its hard to think about world issues when most of my world is just trying to deal with my health.

my world feels so complicated and big and demanding and exhausting.

and then trying to think about the 8 billion other people living lives.. many in countries where there are political wars or genocide or severe environmental damage etc.

its overwhelming.

really struggling with this atm.

ive lost all the strength i fought so hard for the past two years. it doesnt seem fair that it can all be taken away so fast.

im exhausted. trying is exhausting.

disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)

what happens to consistency, to habits, when you have a dynamic disability?

i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.

you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.

for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.

for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.

and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.

then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.

understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.

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

being unattractive or physically different/disabled DOES NOT equal being morally bad/evil. there is an atrocious amount of ableism that occurs when someone doesn’t look “normal.” and i am so fucking sick of it.

in media it is (almost) always the villains who are different/disabled. and media is a massive part of how people form their world views.

i want to mention arcane for example, because people seem to be confused about what good representation is. people praise the hell out of that show, and for good reason it has great things about it, but people told me it had good disabled representation. so i watched it. and while parts of the disabled representation is good.. almost all physically different/disabled characters are portrayed as bad/evil/villains at some point in their story (or all of it.) and then by the end of the show most of them are dead.

abled people i need you to understand that is not good representation. please look out for these tropes it happens ALL the time.

good representation includes different/disabled characters who are heroes and morally “good” too.

if you make all your villains physically different and none of them are heroes i hate you. i am so sick of this.

i really cannot understand how people see disabled life as this glamorised lazy life. i genuinely cannot wrap my head around this.

how could ANY of what i go through be seen that way i just dont get it.

disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)

what happens to consistency, to habits, when you have a dynamic disability?

i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.

you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.

for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.

for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.

and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.

then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.

understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.

fellow LSN disabled people, this is coming from a place of much compassion and love. i hear you when you say you’re jealous of MSN/HSN people’s support. how you wish you could have such support. mental health is complicated and it’s hard to see through emotions and trauma.

but i really need you to understand that our higher support needs disabled friends aren’t inherently privileged for having said support. while it may be that if you had that same support your QOL would improve, they most likely need the support you’re jealous of to literally survive.

the point i really want to make here is there is a difference between support for QOL and support to SURVIVE. people die without these supports. that is not a privileged position to be in.

you’re allowed to be upset and angry that you don’t have the life you want and deserve, but please focus those feelings on society and governments. because they are the ones that created a world in which it is so hard for us to exist.

we need to be friends to each other, not throwing around misdirected anger and blame. please take time to listen to MSN/HSN disabled people and learn about their experiences, there are so many people out there begging to be heard.

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

guys what wards do young people go to, im always the only young adult in my wards, im clearly missing out on the cool areas 😔😔

oh my god i had no idea these were a thing maybe i could bake again 😭😭😭

If you're ambulatory and struggle standing to cook, consider a "perching stool" for the kitchen. They're made to make cooking safer and easier for disabled people and there's a lot of different kinds. I wish I had known about these when I could still stand.

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..

ah yes the fun of will i surprise the doctor with a personal relief method they havent heard of yet 😇

THIS

If you're a disabled young person, you've most likely been hit with the "pfft you think you're in pain now? Just wait til you're my age" bullshit from older people at least once. Everyone talks about how invalidating it is

But I haven't seen anybody mention how it's terrifying, too. Yes, I know health deteriorates with age. I know that old age is a disability unto itself. I know that the healthiest person alive will start getting aches and pains past the age of 40 and may even need mobility aids

I know all this stuff. And it always makes me think "yeah, if I can't walk without joint pain even while using mobility aids AT AGE 21, how painful will life be for me at the age where it gets painful for everyone?"

And it's hard not to feel like I'm doomed, y'know? Where most people get a period of health that they wish they appreciated more when they start to lose it, my starting point was a body that doesn't work properly and it's only gonna get worse from there. It's worse every fucking year.

TLDR stop telling disabled young people that their pain will only get worse to the point of being unimaginable as they age, WE FUCKING KNOW

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 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 😭👍🏻

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