#disability rambles

[gucciguccigarbage]

Sometimes I get that internalized ableism feel of "what if everybody feels this bad all the time and is just better at dealing with it" and then I have days like today. Which I am being very niceys to myself about... But I think the abnormality to crush my disability impostor syndrome is kind of self-evident...

Waking up- Slowly and difficultly. Get out of bed to take my 6am meds at 10 past 6. My first alarm was at 4:50

6:30-7:30- trying to make a meal plan and grocery list for shopping later. Mixed success.

7:30-9:00- Playing sky:cotl (lowkey video game) on voice call with friend

9:00-11:30- Picking up where I left off, ending up with a total of 3.5 hours between two sessions spent planning one month of meals and putting a very small number of items onto a shopping list.

11:30am-1:30pm- Actually running the errand, including putting away groceries after getting home. Pretty decent time for going to both a bulk buy store and a farmstand, I feel fine about that one.

1:30pm-4:00pm- Decided to lie down a little bit to recover after running my errand. Ended up immobilized. Honestly not sure how to describe this sensation that happens every so often, definitely not sleep but also feels tied to the chronic fatigue factor just. Can't move, kinda numb kinda just feeling aches, not really processing info around me but awake? Anyway, that.

4:00-7:30- Filled the dishwasher, reheated leftovers for dinner, and quick-pickled some beets and radishes I got earlier. Now I'm writing this post then going to sleep.

Yeah, writing it out like this it seems pretty clear, right? One errand essentially took up my entire day. I wasn't able to get anything else done that I wanted to. I can say in perspective to good days and in perspective to others, that's definitely not the way the majority of people experience a day in the world. And even now some part of my brain goes "what if that isnt true and youre just whining" when I definitely know enough to say, you know, I'd never CHOOSE to lie unmoving in my bed for hours on end like. Wouldn't I at least willfully 'slack off' with something fun if I could-

[raven-system]

I am so fucking tired of people not taking my disability seriously

And what’s worse, I have it good!

I’m white! I’m middle class!

My parents could afford to get me a diagnosis!

Literally the only advantage I don’t have is that I’m not a cis guy

I swear to god this bullshit double standard for the poor and people of color (and even worse for poor people of color) is going to drive me insane!!

I ought to do some research into disability charities that help fund those communities for when I can actually afford to donate to charity

(when I say I’m middle class I mean my parents are so I’m living that way, but I don’t make enough money on my own that I can afford to give it away yet because I’m saving up to escape home. But that’s a story for another time)

In the mean time, anyone have recommendations?

[hellscap3]

I can't get my prescription refilled until I see my doctor next in August, I'll hope my chronic pain doesn't kick my ass in the mean time.

Thinking of putting together the best stretches/exercises I've found over the years for hip/back pain so that others can benefit from them, though idk how long it will take. 👽

Theres some great resources out there, especially if like me your back always feels tight like everythings compressing and collapsing inwards. I also found a very good video for help with carpal tunnel.

Stay strong out there everyone with chronic pain 💜

[hellscap3]

I love a good "wake up and feel like my wrist and ankle joints are falling apart"

Very joyous.

[raven-system]

You have made a GRAVE mistake by opening the disability discussion doors!! Once you get me talking I NEVER STOP

The only escape is to block my tag for it!!

Now you understand what I constantly subject my friends to!! I can’t tell if they enjoy listening or if they only pretend to to make me feel better!

Please like me!

I crave your approval!

But also fuck ableism!!!

Aaaaa!!!

/hj

[raven-system]

I wanna clarify that I’m not trying to like,, out-do the lady in the tweet?

Like when I said it’s even harder I more meant like,,

I don’t know,,

My parents didn’t tell me I was disabled for a while.. it didn’t prevent me from noticing I was different.. I just thought I was doing something wrong

And now that I do know, when I tell people they try to fight me on it?? Like seriously the amount of times people have been like “are you suuuuure you’re disabled?” Like?? Yes?? I’ve been sure since a doctor looked at me at 18 months and went “yep that ones disabled you better get them glasses and physical therapy”

Like??? ?????

Anyway, I’m rambling,

Point being, illness isn’t a competition and I wasn’t trying to make it seem like such, but I realized it could come off that way