#severe me

[m-e-isannoying]

Me: i could do anything today!

*turns around in bed*

Me: *pulse at 120 bpm* maybe not today.

[the-normaler]

having severe ME will have you catching yourself unironically saying some shit like "yeah I've been experimenting with clipping my nails over the course of a week" and "I remember when I used to go outside," and "I wish it was possible to shower" and "I miss being in cars"

[only-knives]

living life unable to satiate my inner potential because of oppression and disability is actually just hell and i dont know what to do anymore.

i had dreams of having my own artists loft. i had dreams of advocacy work. i had dreams of exploring the world around me. i had dreams of selling my arts and crafts and using my skills for mutual aid.

i had dreams of being part of a friend group that functioned more like a found family. i had dreams of belonging somewhere and having something to dedicate my time towards beyond surviving.

and yet after everything ive been through. now that i finally have my own space and income (welfare prince). its just barely enough. im so sick now. my body is just. shot. completely.

im so weak. i used to be so much stronger, even if ive always been somewhat frail. ive been watching my body slowly deteriorate for years. thinking the entire time that there has to be something i can do. something im doing wrong that i can change. something something something.

im so jealous of everyone who got to "return to their lives" after the lockdowns ended. im so fucking jealous so many of them dont know what they fucking have. they take the life they have today for granted. and have the fucking gall to shame those of us who have no normal to return to.

i had dreams. now i have these walls and an internet connection. i cannot see a future that makes me feel fulfilled as things are now. and i just want to see it again, even if it looks different than before. instead of having to imagine the stars aligning just so i can live. fuck capitalism and fuck ableism.

[powerchairpunk]

there is a lot of negativity online surrounding the bulkier, non-foldable powerchairs, so i just wanted to share an alternate perspective, as someone who recently became a group 3 power wheelchair user.

folding powerchairs can be great for some people, especially part time wheelchair users. they fit more easily into tight spaces, can be transported without an accessible vehicle, and are significantly more affordable.

but some of us need more support than a folding powerchair can provide. custom powerchairs are built specifically to meet complex needs. some may include power functions to mitigate complications that full time wheelchair users face. these chairs are better quality, easier to find technicians for repairs or maintenance, and more comfortable to use for long periods of time.

so, why do so many full time wheelchair users opt for folding powerchairs? it’s the same reason that many people who need rigid frame, custom manual wheelchairs use cheap hospital chairs. something is better than nothing, and custom wheelchairs simply aren’t environmentally or financially accessible to most people.

it’s really a shame, as the importance of using the mobility aid that’s most suited to your needs really can not be overstated. custom built wheelchairs should not be a luxury. they should be available to anyone that needs them.

[sacredrelicoflove]

May is myalgic encephalomyelitis awareness month!

This disease can be devastating and affects millions of people around the world. For months, I was confined to bed in a dark, silent room. Any amount of light would pierce my eyes and head with a staggering migraine. Any sound physically hurt to the point of tears. I couldn't sit up for more than thirty seconds or my heart rate would easily climb into the 180s. I lost the ability to bathe myself, to walk more than a few feet, to carry out any tasks of independent living, even the ability to cry as the exertion would cause a crash into worsening symptoms. My constant pain level was unbearable enough that nearly drove me to ending my life. This is the reality of living with severe ME, and it's nowhere near as severe as this illness gets.

Those who are at the most severe stages cannot speak, move, or open their eyes. They are often tube or TPN fed because the action of chewing is too much for their bodies to bear. This condition has taken so many lives, some of which I have known and watched die in slow motion. Onchologists have likened the quality of life of those with this disease to end stage terminal cancer.

The plank4ME challenge was created to raise awareness for this disorder. The idea is to hold a plank for as long as possible to feel a fraction of what it is like for someone with MECFS to lay flat in bed "resting". Research for this disease is drastically underfunded and so no strides in care have been made in many years. Even with millions of us missing from life and confined to dark beds, there is still no treatment, and no cure.

Please, consider donating to the Open Medicine Foundation at the link below to aid us in our search for the cure. Because no one deserves to live in a dark room.

https://openmedicinefoundation.crowdchange.co/54040

[phleb0tomist]

happy disability pride month to people whose main ‘mobility’ aid is an adjustable bed

people who need to lie flat all the time

people who lie flat most of the time and only sit up to eat or use the bathroom

people who are too unwell to be transported anywhere, even within their own home

people who structure their whole week around recovering from a single planned trip out of bed

people who are technically wheelchair users because they can’t walk, but can’t tolerate being upright for long enough to use a chair either

people who can’t adapt activities to be accesible, and instead have to just miss out on 90% of life

i see you and i respect you and love you. if you feel limited, confined, sick, or bound to your bed, i see you.

[talkethto-thehandeth]

Sometimes I wish my biggest issues with my disabilities were having the worries of “am I disabled/sick enough” and not “when is this gonna kill me/my friends” lol