carry me

“Pain is always new to the sufferer, but loses its originality for those around him… Everyone will get used to it except me” - 25 // autistic, chronically ill from a very young age, currently being treated for narcolepsy and severe medical PTSD. side blog where i don’t censor myself talking about these things. looking for a community to feel less lonely in all this.

[daylitvampire]

the shame of admitting to your doctor "i didn't take the medicine you prescribed me three months ago bc i was scared and could not work my way up to conquering that fear in three months <3"

[daylitvampire]

was thinking about how my cataplexy is primarily in my neck and how i wish i had a support for that somehow then realized i should try those like... traveling neck pillows. and i could decorate it real cute. the good news is those already read as "i am sleepy" so it's a good warning i am narcoleptic as well.

[daylitvampire]

"The Body's Insistence on Meaning" by LJ Kirmayer

[daylitvampire]

on my main i was using the metaphor "it's like trying to make a duck bark" to describe my chronically ill body and the functions it just cannot physically do. my whole life i was so harsh on the duck as if it has been sabotaging me, but it has been trying to bark, it really has.

now imagine you are young, and a big powerful authority figure tells you to make your duck bark. the duck can only make some disturbed, pitiful sound, doing what it thinks a bark is supposed to sound like. the authority figure says "no, make it really bark", and you have to say "i train it every day to bark, it can't bark". they tell you to try harder. they grab your duck and squeeze it, trying to make a barking sound come out. the duck can't bark.

it was never your fault. it was never the duck's fault. the things doctors asked of you were never physically possible, and you were trying your best. please don't hate the duck. it was trying its best for you, too.

[nullapophenia]

(this is a piece about disability, and always being too tired or in pain to do anything, no matter how badly you want it. looking on at the people and things you love and just not being able to join in, a perpetual "maybe tomorrow". i will almost never be able to do anything beyond a certain threshold, and neither will so many others.)

[cannabiscomrade]

If you have one or more chronic illnesses, do you identify as disabled?

I have a chronic illness and I identify as disabled

I have a chronic illness and I don’t identify as disabled

I have multiple chronic illnesses and I identify as disabled

I have multiple chronic illnesses and I don’t identify as disabled

I am disabled but I do not have chronic illness(es)

> I am able-bodied (see results)

Secret other option (tell me in tags)

Voting ended onApr 3, 2023

Trying to see what people’s perspectives are on disability and chronic illness. I am both- I have multiple chronic illnesses and I see myself as disabled, both quite literally and physically, as well as a political identity/position.

I often wonder if there’s a need for the discrepancy when we say things like “disabled/chronically ill”, as if disabled isn’t already inclusive of chronic illness. I’m open to hearing other people’s thoughts on this as well.

Please reblog for more input outside of my disabled/chronically ill mutuals.

[daylitvampire]

the stimulant shortage is being called the "ADHD med shortage" but please don't forget those of us who rely on the drug for physical disabilities. i know our population is much smaller, but please please don't erase us right now. it's so scary to struggle to walk and to have your body become unpredictable again. i'm lucky to be living with people who can care for me right now, but i'm falling behind in all my work. please include us in the conversation when discussing the impact of this shortage.

[xenosagaepisodeone]

self proclaimed schizoposter nervously typing '911' into their phone and hovering their thumb above the 'call' key as they hawkishly watch a disheveled guy at a bus stop make repetitive movements and ramble to himself

[myxomavirus-deactivated20250211]

You know what lemme just come back to this post because I (physically disabled, joint pain, cane user) was on a full train last night with the biggest heaviest backpack you could imagine bcs I’ve just become homeless and I was on my way to a friends house. I tried to ask people for a seat and got flat out ignored. Nobody would even look at me. It got to a point where I was literally shaking crying sobbing dry heaving resorting to begging “I’m really sorry everyone but can someone please give me their seat I have joint problems I’m in a lot of pain”, speaking to people directly “excuse me but you’re in priority seating and I’m disabled and I really need to sit down” and the only person in the whole train who would even LOOK at me while I was wheezing and clutching my stomach and sweating about to pass out in some of the most rancid pain I’ve ever felt in my life. was an old disheveled guy with a tic who was mumbling to himself. and he quietly tried to console me and convinced me to just sit on someone’s suitcase. I hope all the unnatural hair coloured pierced 20 somethings on that train that night ESPECIALLY never know peace for the rest of their fucking lives

[nbvirgos]

You seriously can’t call yourself a leftist or a progressive or whatever if you can’t treat other people like actual human beings. I’ve had disheveled people who a lot of ppl would assume are homeless, be quicker to offer me a place to sit on a train than 20 somethings with unnatural hair color and “Be Gay do Crime” pins and stickers do that (esp when I injured my ankle coming back from work nobody except a mumbling elderly lady offered me their seat). They’re also not the ones who threaten to call cops on me when I’m taking foodstuffs from grocery stores! You can post about anarchy and being progressive and unhinged all you want but the fact that you would treat people who are physically disabled and in poverty this way makes you just as an awful person as anybody else

[thatadhdmood]

@nutmegan17 on tiktoks eating tray hack

By keeping a tray full of no prepare necessary food, in the fridge it can be used to aid neurodivergent or fatigued people.

By putting food like, cheese and crackers, or whatever is a safe food for you personally on the tray, it can be taken easily to the couch or bed to be eaten from whenever you are hungry.

This prevents executive dysfunction or fatigue and any reason preventing you from eating. You need to care of yourself because everyone needs food to stay alive including you.

You deserve to eat even when on a bad brain day and are unable to prepare a meal for yourself.

If not having a full meal doesn’t satisfy you, a snack may even give you the energy to make a full meal afterwards!

[daylitvampire]

will never understand the argument of “faking chronic illness to be special” bc i’m already the world’s specialest little princess and it has nothing to do with the fact that one of my organs doesn’t work properly

[daylitvampire]

the traditional game of the chronically ill: how long can i put off seeing a doctor when i get a flare up

[ryanjudgesthings]

There's a mistake I see a lot of people in the mental health community make and in all honesty, it's one I've made myself. But I think we should really work on it. And that's saying "if this were a physical illness, wouldn't you care?"

I've learned that no actually, people wouldn't care. Katelyn Weinstein (theADHDprincess on Twitter) is a neurodiversity acceptance activist who really put this in perspective for me. She said that it's actually more an issue of longevity than physical vs mental health.

If you're having a bad day people will generally be understanding. But when you're experiencing chronic depression and you have many bad days people lose sympathy.

In the same respect people may be understanding when you've broken a bone that will heal properly or when you have a cold that will go away soon in ways they simply won't understand when you have chronic pain or need to use a wheelchair. They may send chicken soup for a temporary situation, but when you need consistent accomodations it's an entirely different story.

I understand that from our perspective it looks like people care more about physical health than mental health, but it's good to remember that our own perspective is also limiting. Facing ableism doesn't mean you can't be ableist. And I know so many people are not ill-intentioned when they say this. I know I wasn't. But we can't discount the lived experiences of physically disabled people. If we want true equality we need to be united and we need to listen to those with physical disabilities and illnesses. And those with physical disabilities and illnesses (some of which are also invisible) have said that they are not given proper accomodations either.

So let's be united and fight for equality and accomodations for everyone, no matter what their illness or disability may be.

[finallyhaunted]

People love to talk about whether or not disabled people can work

but if you can work just fine and your disability is destroying your ability to have a life outside of work (because work takes all your energy and more)

Dead silence. Nobody cares.

[eenymeenypia]

File this under, oh you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.

[chameleonchild]

This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours of activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it. 

Far too often abled people see the things they do easily as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.

[finallyhaunted]

reblog bc the non activities thing seems really important words

[seananmcguire]

I get X number of pain-free steps per day right now, which means that, for large conventions (like SDCC), I need to be in a mobility device.  I had someone ask if I used up my steps every day before transferring to the scooter, and look surprised and a little horrified when I said “no, I save them so I can go to the bathroom unassisted.”  Like, they had never considered that walking is involved in peeing.

[finallyhaunted]

!

[andreashettle]

Reblogging for the important point that the term “activity” may mean something very different and much broader for a disabled person with a chronic pain or fatigue related condition compared to its meaning for a non disabled person. If you’re tired enough, simply sitting up in a chair rather than lying in bed is an activity that drains energy otherwise usable for other things. A thing I knew from other people with pain and fatigue related conditions, but worth reinforcing for followers who didnt know or had forgotten.

[castorleaf-deactivated20181217]

How do any of you earn things?

[finallyhaunted]

We don’t, it’s almost like disability puts us at risk of poverty or something.

[daylitvampire]

(girl going out without his walking aid) ohghhgh i got plany of muscle strength

[daylitvampire]

i feel terrible venting about the same things all the time, but what am i supposed to do? things don’t change, they don’t get better and i can’t do anything about it.

[neurodivergent-noodle-deactivat]

when you’re disabled, your entire life is a trade-off; every decision is a cost-benefit analysis where the cost is a body in pain, and the benefit is participation in society.

[catmat]

Just wanted to say thank you to the chronically ill and disabled who share their vulnerabilities and feelings here. You help make this chronic illness trip a little less lonely.