an--artistic--autistic

[an--artistic--autistic]

am i about to immediately overwork myself while the pain meds are still working to catch up on as much as possible? yes i am

and i wont regret it as long as i get everything done that i need to

[an--artistic--autistic]

good doctors/nurses/technicians/medical professionals otherwise specified are amazing and i owe them my life,

I've gotten so lucky recently (especially compared to past experiences) and i would absolutely be dead by now if it weren't for them

[an--artistic--autistic]

when I got diagnosed with my back issues I thought people would finally believe that I'm disabled because I literally have an xray showing one of my vertebrae is not where it's supposed to be. and you know what? turns out people who don't believe in invisible disabilities also don't believe in incredibly visible disabilities

[an--artistic--autistic]

so i went back to the hospital today

got confirmation that it's muscle spasms and definitely not a heart problem

also pain has been the only thing keeping me awake and while the drugs they gave me were non-drowsy i don't think I've ever been this sleepy

[an--artistic--autistic]

@ my body

genuinely what the fuck

[an--artistic--autistic]

Trying to explain to a doctor that the pain you’re experiencing isn’t your normal pain as a young adult (especially when you’re a woman) is so aggravating.

Literally a conversation I had with a doctor this past week:

Me: this isn’t my normal type of pain it feels different

Dr: and how do you know that?

Me: because I know what my usual chronic pain feels like and this is not it

Dr: but you’re too young to have chronic pain

Me: I’m in pain and over the counter medication is not helping.

Dr: just take some paracetamol it’s probably just your period cramps

(I am not on my period, this was about spinal pain and numbness in my legs)

Genuinely some doctors are amazing at their job and I applaud all medical workers who actually care about their patients but like is it in the training to learn how to just not listen to people coming for help ????

[an--artistic--autistic]

Because I'm a cognitively disabled transgender who thinks it's important that intellectually disabled people are listened to and respected, I end up making friends with a lot of intellectually disabled transgender people and the amount of people who WANT a medical transition but can't access it due to caregivers or guardians is TOO DAMN HIGH.

We need to find better ways to support decision making and consent. We need to help people make their own goals and then reach them. Not just in gender transition but in life all around. What a medical team or guardian wants for someone doesn't always cover everything a person could want out of life.

[an--artistic--autistic]

hey when a disabled person says theyre tired, theyre most likely lying. what they mean is that they are so utterly EXHAUSTED that theyre struggling to function.

i suffer with terrible fatigue as part of my condition and i find it hard to partake in hobbies i enjoy, nevermind hardwork, when it hits. which is a lot of the time. i sometimes sleep 10+ hours a night and still have to take a nap.

before i started seeing doctors abt my condition, people would always ask how i am when i was at work and when id answer id always get 'youre always tired!'

the worst one was the guy who turned round to me and went 'you dont have kids, you dont know what tired is.'

girl, if most able-bodied people were operating at the levels i operate at most days, they wouldnt have the energy to get out of bed or feed themselves. some days i cant do that and i live like this every day. some days i become so exhausted i cannot form words.

idk man chronic fatigue is not just 'being tired all the time'. its debilitating. imagine not eating because you dont have the energy to lift cutlery or chew. imagine being so drained that you physically cannot talk. imagine having to wait until someone else is home to go to the bathroom because you dont have the energy to get there alone.

some of us live like this and when you measure our worth based on what we contribute, it becomes a depressing existence.

[an--artistic--autistic]

When talking about disability and chronic illness, people don't understand that happiness isn't optional. Humans have a fun meter in their brain just like the sims, and that doesn't change for disabled people.

I love recognizing limitations and accommodating myself when I can, but at the same time, I WANT to do things for my own happiness. I WANT to cosplay at an anime convention, even if that means I won't be able to walk for 3 days. I WANT to go canoeing with friends, even if that means I'll be sick for 2 months after. I want my room to be clean and I want to decorate my space and I want to go have fucking fun in the real world and not just video games for once.

And when it comes to instances of stuff we do purely for fun, people still talk down to us and give us the "know your limits" speech like us having fun exists in the same context as breaking our bodies for the sake of capitalism. It's not the same thing. Quit shaming disabled people for doing shit. Let disabled people chose informed risk for the sake of fun and happiness. Fun and happiness are not optional.

[an--artistic--autistic]

If you ever have trouble cutting pills:

There are scissors for pill cutting.

Pill cutters (the boxes with the blade in the top) were just crumbling my pills.

With the scissors, I cut all of my little 7mm / ¼inch pills in half, and half of those in half again.

In under ten minutes.

That includes the learning curve, getting the light angles right, and putting them back in the bottle.

Mine are Auvon brand, for those interested.

[an--artistic--autistic]

props to the one guy that offered the accessible seating in the lecture hall

[an--artistic--autistic]

on the topic of mobility aids i just want to throw out a non-comprehensive list of tips from someone who's been using mobility aids for 10 years

everyone has different needs and responds differently to certain mobility aids

if a cane isn't right for you, it doesn't mean you shouldn't look into other aids to see if they help

it doesn't matter if it's a genetic condition or an injury- consider an aid

wearing braces and using walkers, canes, and so on is very normal after injuries. please use them if you are in pain for a long time after an injury. injuries are serious too

if you buy a cane and it didn't work out for you, you're hurting no one

folding canes are helpful but have a lower weight limit generally speaking

crutches may be a good idea for you if you really struggle with balance and stability

your mileage will vary with each type of aid

if you need a rollator, wheelchair or scooter, it really is okay to get or try one. if your insurance won't cover it it's okay to buy or crowdfund one

walkers and rollators require low upper body strength, unless they need to be lifted up on to a curb in which case the user may need assistance

even the lightest and most well constructed wheelchairs are still heavy. they require a lot of upper body strength and mass to propel if you are doing it completely by yourself. you may also need assistance transporting them, getting them up or down hills, on to curbs, and so on

if you struggle to walk for extended periods of time (30+ minutes uninterrupted) you probably need some type of aid. if you have poor balance you may need some type of aid.

you're not hurting anyone if you end up not needing the aids. it's fine to try them

it doesn't matter if the pain or exhaustion or bad balance is related to your weight. you deserve to be as mobile as you want to and can be. its okay for fat people to use mobility aids. it's not embarrassing. being a fat person using a mobility aid in public isn't embarrassing. the people insinuating that are. fat people deserve quality of life

[an--artistic--autistic]

the bonus of making my entire wardrobe comfortable and accessible for me is that i can still look very cool even when i feel like shit and it takes no extra effort

[an--artistic--autistic]

"Who radicalized you?" I became disabled and realized that society doesn't care about one another lol

[an--artistic--autistic]

nevermind folks im in the hospital

so as it turns out, most of the symptoms I've been having, especially during the past few back-to-back flare ups since October, are not actually fibromyalgia symptoms and i will be asking my doctor for a referral to a neurologist to do ms testing, since there is a family history of it and it fits very similar to my symptoms

[an--artistic--autistic]

first time using a mobility scooter in a store 🎉

ikea is a lot of walking so even with crutches idk how well Id do at that today

[an--artistic--autistic]

talked it out with my friends and I'm a lot less freaked out now. Like, it's still absolutely a problem but I have a plan, and a timeline, and people who can back me up and confirm that there have been more issues, so.

so as it turns out, most of the symptoms I've been having, especially during the past few back-to-back flare ups since October, are not actually fibromyalgia symptoms and i will be asking my doctor for a referral to a neurologist to do ms testing, since there is a family history of it and it fits very similar to my symptoms