Fibromyalgia - Tumblr Posts

the body may change with disability

for me, i used to take some pride in the size and strength of my calf muscles. but since i developed chronic pain and have required mobility aids to walk, the size of those muscles have decreased drastically.

and rather than allowing myself to sink into feelings of insecurity and inferiority, i remind myself that bodies are inherently neutral and are given worth (or not given worth) based on politics, biases, etc. and also! i cut myself some slack because i am disabled!! i couldn’t work out those muscles back to their original size even if i wanted to

and that’s okay

in the life of a disabled person, little things can build up very quickly into something that you just can’t fuckinh deal with

if you missed a bus, and forgot dinner, and didn’t drink enough water, and other things that seem “small” to other people, can be a big deal to a disabled person.

because many of us are living in pain, for me it’s physical pain. so the ability to cope with these things, the ability to move on, is sort of stripped away because i already have to cope with so many things at once.

forgive your disabled friends for always being angry with the world. but don’t feel pity for us

sometimes i worry that i’m faking with my pain. but then i realize i’m not in pain because i’m not moving. and when i move. i’m in pain.

so really i just need to stop listening to internalized ableism

i live in an apartment building and i decided to go down to the gym in my wheelchair. but the door that leads to the hallway where the gym is doesn’t have an automatic door so i had to open the door by myself. then the door to the gym itself wasn’t automatic.

seems like for all the shit so many disabled people get to “just exercise”, it’s certainly not easy to get in the place to exercise.

i got new gloves! my mum got them from a hardware store so i’m not exactly sure what type of glove they are. but they’re super reinforced and fit well :) i’m using them tomorrow so i’ll keep note of how they work

i went out in my wheelchair to a festival today :)

it’s my first time being out for that long while in my chair. luckily, i had my partner and friends to help me whenever i got stuck/my arms got tired.

i did, however, get two blisters on my hands. do any other wheelchair users have suggestions for how to minimize blisters? or any at-home remedies for blisters?

in one day, i got told my tests came back normal AND got my disabilities invalidated. ableism is really a demon

it’s hard to retain your autonomy when your body and experiences are medicalized and put under constant scrutiny

get tattoos, get piercings, do what you want with your hair, dress however you want. i’ve found that taking control of one’s appearance works wonders for reminding yourself that you are not just numbers, or tests, or lab files.

i was on the bus with my mum and i was using my rollator. i had it folded up while i was seated so others could get by. when we went to get off at our stop, my mum grabbed my rollator from my hands and try to get off the bus with it before i could. i had to shout to her that i need it to walk because i DO.

DONT TOUCH MOBILITY AIDS unless given verbal consent. DONT try to “help” disabled people by touching/grabbing/moving mobility aids without being asked.

how would you like it if someone started grabbing and moving your damn legs around?

my university has grants and services for adaptive technology, such as noise cancelling headphones, AAC devices, etc. however, there are NO programs or grants for the physically disabled or those in deed of mobility aids. the only thing they have are DAILY rentals for wheelchairs, which is not helpful at all.

my campus doesn’t even offer disability studies and in the equity studies program, courses on disability are not offered.

it seems that disabled people, especially the physically disabled, are being completely swept under the rug and pushed to the side like we don’t even exist.

my joints are stiff like the tin man. i bend over and that shit goes creeeeeak

this is a post for every cripple who keeps going despite it all —

for every cripple who has to sit through countless doctors appointments and somehow continues to carry on.

for every cripple who is dealing with an unsupportive, ableist, and/or abusive living situation and keeps on existing.

for every cripple who deals with a hateful society that doesn’t even consider them (as a person, friend, consumer, or partner) and wakes up in it every day.

this is for you. keep going.

chronic pain has me feeling like a barnacle

does anyone else with fibromyalgia deal with pins and needles. like a lot ?

first day of class :)

i wasn’t able to get my seating accommodations in time because the accessibility department insists on moving at a snail’s pace

and the prof played music so very loudly i needed my noise cancelling headphones

but otherwise………. not so bad!

what really gets me about the accommodations process at my university is how unaware they are of physical conditions and the needs of those with physical disabilities.

when it came to my accommodations surrounding my needs for my mental health and autism, it was a pretty straightforward process wherein the advisors seemed to know what accommodations i might need. such as more time for exams and essays, trying to get me out of social participation requirements, etc. 

but the minute i told them i needed help physically getting to class, it seemed like they had no idea what to do. even when i asked for certain accommodations, they apparently weren’t available to me.

im not saying the accommodations process was at all easy for my mental health and autism, in fact it’s been incredibly difficult, but at least the “accessibility” department KNEW what i was talking about.

yelling into the mirror: i will no longer feel guilty about my limitations !!!!!!! i will no longer feel guilty about my limitations !!!!!!!!!!!!!!!!

the canadian government has lower disability funding for post secondary education. if you have a disability and have OSAP (funding for post-secondary education), you USED to be entitled to $4,000 to help with your tuition. NOW, it’s only $2,800.

domestic fees at my university are, comparatively, not that high. but, as a disabled person without a job and a family income that qualifies me for OSAP, this means so much of my tuition must be paid out of pocket now or through countless grants and loans application.

and guess what? i only found out NOW when i cant change the funding and have no other way, other than out of pocket, to pay for tuition

for one my classes, the final exam is in-person and 3 hours long. i tried to get accommodations for it, but the most the accessibility services said they could give me was 30 minutes total of a break during the entire session.

its impossible to expect an able bodied person to sit and write for 3 hours, so expecting a disabled person to do so (when i genuinely CANNOT) is even more disappointing and isolating.

making friends at uni is hard… especially when you walk with a mobility aid and i think that makes other students kinda apprehensive to approach. sigh :(