cosmoechi

[cosmoechi]

early-morning walk for the waking.

#this one's a little rough but i haven't written anything in a while #💖.txt #actually disabled #chronic illness #cripple punk #potsie #disabled poetry #late night chats with the oak bride #poetry #ameteur poetry

[cosmoechi]

hello pots gang I fucking hate bisoprolol

#💖.txt #potsie #pots syndrome #chronic illness #dysautonomia #literally so dizzy im bedbound i need to STOP these but the specialist is on holiday!!! #i think its ivabridine (?) next i hope thats kinder

[cosmoechi]

[cosmoechi]

scream-singing at the top of my lungs that I want my life back! And getting the echo that this is my life. This has always been my life. I have to make the best of what I have.

and thus, we carry on.

#i don't really know if this is gonna make sense but im having one of those evenings where it consumes me #💖.txt #actually disabled #chronic illness #cripple punk #in a flare up

[cosmoechi]

it might seem weird at first but it's true that having symptomatic joint hypermobility (meaning the "bad" kind of hypermobility that results in chronic pain, a proneness to dislocation/sublixation, etc. such as in EDS, hypermobility spectrum disorders, and other CTDs) doesn't necessarily mean being very flexible and sometimes this can potentially present a problem when it comes to accurate assessment and diagnosis. part of this is because flexibility doesn't just involve joints; it also involves muscles and other soft tissues.

i have generalized symptomatic hypermobility (either gHSD or hEDS, who knows because it's not like i'm getting properly diagnosed anytime soon) and i'm an 8/9 on the beighton scale. i've been incapable of touching my toes since elementary school because my hamstring muscles have shortened over time due to the strain from compensating for hyperextended joints and hypotonia. i can't meet the 9th beighton criteria where i place my palms flat on the floor without bending my knees, but that doesn't mean i don't have a hypermobile spine, because its my shortened hamstring muscles that are preventing the movement, not the joints. i was just doing stretches at the gym earlier today for cooldowns that looked absurdly easy for the able-bodied person in the video i was following but i couldn't bend my legs to the full extent that they did due to other shortened muscles in my legs, which is also a consequence of hyperextended joints and hypotonia.*** i think it's easy to guess why something like that might end up masking the full extent of joint hypermobility in some people.

(***for people who don't know what hypotonia is, it's when there's inadequate tension in the muscles in the resting state or in response to a passive stretch, such as posture. in other words, muscles are too loose, which can cause a myriad of really sucky problems! it's the result of CNS dysfunction and/or structural problems in the muscles - conditions like EDS and other CTDs sometimes involve hypotonia due how they can affect viscoelastic properties of muscles. while being characterised by "floppiness," hypotonia can still result in stiffness and shortening of the adductors, quadriceps, sub-occipital muscles, etc.)

in more extreme cases, this kind strain can lead to muscle contracture, which is when a muscle is permanently shortened and hardened. joints themselves can also become contractured, and as a matter of fact, contractures appear to be part of how some forms of EDS are identified, such as myopathic and musculocontractural EDS (it's even in the name of the last one.) this is a quote from someone with mcEDS from elhers-danlos.com ("Musculocontractural EDS: My puzzle pieces put together") though i know the EDS society doesn't have the best rep:

When I was born 8 weeks premature by emergency caesarean, the doctors and Mum and Dad were stunned. Apart from requiring life-saving treatment, I was floppy, and also had major obvious deformities of my limbs and dislocated hips. I had contractures in my hands, fingers, shoulders, hips, ankles and feet. I have very little muscle in my neck, arms and legs. I spent 10 weeks in NICU and was diagnosed with Arthrogryposis at birth.

(...)

The contractures affect me in different ways. My hands are always clenched, and they do not open out properly. I’m unable to tie my hair up myself unless I am lying on my back, which allows gravity to pull my arms back. I can’t put my hair behind my ears with my right hand unless I’m using my left hand to push it backwards. Although I am right handed, the fingers on my right hand don’t open more than 2 inches and I’m unable to pick anything up with that hand. My left hand is far more deformed, but I can grab things with that hand and use it to stabilise my right. I carry things on my right side in between my arm and torso in the crook of my elbow and I look like an axe murderer when holding a knife.

so yeah, ironically enough, sometimes being symptomatically hypermobile involves a limited range of motion rather than being especially flexible. that's your fun fact of the day!

[cosmoechi]

People with low spoons, someone just recommended this cookbook to me, so I thought I'd pass it on.

I always look at cookbooks for people who have no energy/time to do elaborate meal preparations, and roll my eyes. Like, you want me to stay on my feet for long enough to prepare 15 different ingredients from scratch, and use 5 different pots and pans, when I have chronic fatigue and no dishwasher?

These people seem to get it, though. It's very simple in places. It's basically the cookbook for people who think, 'I'm really bored of those same five low-spoons meals I eat, but I can't think of anything else to cook that won't exhaust me'. And it's free!

[cosmoechi]

*Trying to look for quick and easy recipes on BBC Good Food especially soups*

*Every single recipe including unclear instructions, secret prep, incredibly long prep or completely alien language of cookery*

Me, a severely ADHD autistic with major cookery sensory issues, dyscalculia, and rapidly worsening intrusive thoughts about poisoning myself or others accidentally:

[cosmoechi]

[cosmoechi]

wish I was bedbound in the fun kinky way, not the 'i'm in too much pain to walk more than a step or two' way.

#💖.txt #actually disabled #chronic illness #cripplepunk #recovering from a surgery rn and my leg decided to uh. fucking HURT #all I'm saying! one of those is far more enjoyable than the other

[cosmoechi]

my pain scale invention. it goes from 0-16. you fill it out like this:

i made this because i find pain to be a multifaceted thing that influences me in different ways. i can accomplish lots of small tasks while in pain but that doesnt mean i can move around or even think clearly. its name is the goldstein expanded pain index or gepi. you can use it if you want. or not.

[cosmoechi]

put spikes on your wheelchair's handles. wrap barbed wire around your cane or crutch so it'll hurt like a motherfucker if someone kicks or grabs it from under your hand. wear a personal alarm and pull the pin every time someone moves you without your consent, leans on your chair, takes a seat on your rollator, taps your hearing aid, steals your AAC device. scream for help when you're abducted. wail like you're in agony when people trip you up or knock into you. take pepper spray to the grocery store. take a knife to the club. leave cards that say "fuck you" under the wipers of inconsiderately parked cars and scratch access codes for bathrooms on the outside of the door. we are not begging for mercy, we're fighting dirty. we have to.

[cosmoechi]

i hate you ehlers-danlos syndrome i hate you pots i hate you chronic migraines i hate you brainstem auras i hate you central nervous system complications i hate you degenerative disc disease i hate you hypotension i hate you osteoarthritis i hate you fibromyalgia i hate you tmj disorder i hate you carpal tunnel i hate you mcas

[cosmoechi]

Since I’ve never seen any kind of positivity post for this:

Shout out to people who get IV infusions weekly, biweekly, monthly, multiple times a year.

Shout out to people whose hands/arms/elbows/feet/legs are covered in scars and scar tissue. Shout out to people whose scar tissue hurts or locks up joints. Shout out to people who are covered in bruises after getting an IV.

Shout out to people whose veins roll or disappear, people who need multiple sticks or digging to get a vein. Shout out to people whose veins blow when getting IVs or during infusions. Shout out to people who feel like their veins have no more to give.

Shout out to people who cry or need someone to hold onto when getting an IV. Shout out to people who have anxiety or panic attacks when getting or thinking about IVs/infusions.

Shout out to people who will continue to need IV infusions into the foreseeable future. Shout out to people who will continue to need IV infusions for the rest of their lives. Shout out to the people who leave their IV in for several days, and thus need to cover it and continue with school, jobs, chores, etc, and sleep with it in.

Shout out to the kids and teens who need IV infusions.

Shout out to people who feel self-conscious about their IV scars. Shout out to people who worry about someone noticing them and treating them differently (though no one should be shamed for their scars, no matter how they got them).

Shout out to people who are traumatized from IVs/infusions. Shout out to people who have terrible memories associated with IVs/infusions.

Shout out to people who go to the hospital for infusions. Shout out to people who get infusions at home. Shout out to people who lose hours of their days while getting infusions.

You are no less worthy of love and positivity because you need IV infusions.

–

Anyone can reblog (and please do!), but only people who need (or have needed) regular/intermittent IV infusions should add on.

[cosmoechi]

I remember studying Flowers for Algernon at school, and what a huge impact it had on me. How dreadful, I thought, to know your intelligence is slipping away and being unable to prevent it. The horror you must feel.

And now, as I sit here with my multiple chronic illnesses that cause various types of cognitive impairment, watching my ability to think, plan, create, follow instructions, find the write words and form complete sentences slip away like grains of sand through my fingers, I know what that horror feels like.

So I looked up Flowers for Algernon, to see if I could find any quotes, find out if I was misremembering it, inflating it in my mind into something grander than it was.

I was not.

The quotes are still emotionally devastating.

"I'm not going to give up my intelligence without a struggle. I can't go back down into that cave. There's no place for me to go now"

“It was as if I had been looking at the whole thing clearly on the blackboard of my mind, but when I turned to read it, part of it had been erased and the rest didn’t make sense.”

"The only question now is: How much can I hang on to?."

"But writing is harder. I have to look up even simple words in the dictionary now and it makes me angry with myself.”

Excuse me while I weep for a while for what I've lost.

#gonna use the blackboard analogy for brain fog now

[cosmoechi]

older adults are astounding i tell them my POTS means i need to consume more salt and ill send multiple sources and everyone over 40 is like “nooo bc salt bad” just go fight the doctor directly at this point

[cosmoechi]

fellow heat sensitive individuals. go drink water. learn from my folly.

if heat makes you flare up, GO DRINK WATER

if your meds lower your heat tolerance, GO DRINK WATER

if none of the above apply to you but youre still suffering through a heat wave GO DRINK WATER RIGHT NOW

[cosmoechi]

People with low spoons, someone just recommended this cookbook to me, so I thought I'd pass it on.

I always look at cookbooks for people who have no energy/time to do elaborate meal preparations, and roll my eyes. Like, you want me to stay on my feet for long enough to prepare 15 different ingredients from scratch, and use 5 different pots and pans, when I have chronic fatigue and no dishwasher?

These people seem to get it, though. It's very simple in places. It's basically the cookbook for people who think, 'I'm really bored of those same five low-spoons meals I eat, but I can't think of anything else to cook that won't exhaust me'. And it's free!