extreme-dyke-syndrome

[extreme-dyke-syndrome]

My familiar (partner for the alloromantics out there), who I have been exposing to physical disability stuff, was trying to convince their coworker to get a cane for the pain he's experiencing after surgery, and when the coworker went "I don't need all that" my familiar apparently went "they're not a bad thing, my boyfriend's has stickers!"

[extreme-dyke-syndrome]

Big Shame Today!!

Hey chat, looking for some reassurance today I think.

I spent two years getting like, 50 cavities fixed that I now know were, in part probably a very early symptom of my EDS (there were many other significant reasons I had them, but I'm convinced that my EDS made me extra susceptible), and a year after they finished getting fixed, I'm back at the dentist with MORE cavities.

I know consciously that it's because my EDS fully presented and then rapidly progressed in the last year, and not because of any failing on my part, but holy FUCK it's hard not to see it as one. Out of literally all my symptoms, this one is the one by far that causes me the most shame and anxiety. I feel stupid saying that, but God it is so hard not to see my teeth rotting as a personal failure.

It's especially hard because I have to show up to this dentist that JUST fixed a million cavities in my mouth and break to him that I have even more now. I know able-bodied people tend to discount that things are symptoms, and that on top of everything, I'll look like the failure I feel I am. How do I get past all this shame? It is so debilitating and stressful to feel this every single time I eat or look in a mirror, I just don't know what to do.

[extreme-dyke-syndrome]

1 and 7 for physical disability asks!

Oh my God, you asked this FOREVER ago and I missed it!

1. I have a little mobility aid corner in my apartment, here it is! The wheelchair hasn't been used much because I'm still sorting out my ability to actually do that, but I've used it a little!

7. So I'm not diagnosed, and have done very little to interact with medical professionals about my diagnosis out of a mix of severe executive dysfunction and the certainty that they will not listen to me. That being said, I DID go into the doctor back when pain first developed, and had a pretty ridiculous experience there. This was just a GP, so she could only run me through the most bare basic criteria, one of which was the Beighton Test for hypermobility. I scored a 7/9 on the test, and instead of a rheumatology referral, she went:

"Don't run any marathons!"

Before referring me for limited PT and sending me home. What a fucking quote.

[extreme-dyke-syndrome]

15 on the asks?

I discovered cripplepunk long before I was physically disabled, actually! Maybe a year or two before my body started to give out, a friend of mine started experiencing a physical disability with its knee(s), and told me about a Really Cool Movement that it discovered as part of its acceptance process. I thought it was really interesting and loved the premise, but didn't get involved at the time because it wasn't my space to be in. Then I ended up becoming physically disabled, and how much cripplepunk helped my friend with acceptance came into my mind. I decided to check out the space as I was just beginning to realize it may be mine to be in, now, and I've been here ever since!

[extreme-dyke-syndrome]

Proud to be your resident drug-doing, sex-having cripple 🤍

Wild concept that shouldn’t be wild and the coldest take ever: disabled adults are *adults* and not just children trapped in adult bodies

Disabled adults have sex

Disabled adults do drugs

Disabled adults curse

Disabled adults get piercings and tattoos

Disabled adults can make adult decisions and act and behave like adults because we are adults

It’s just so weird for people to constantly infantilize me all because of my mobility aids when I’m not a child!!!

[extreme-dyke-syndrome]

I was able to go on a several hour long date yesterday because I was in a wheelchair. I got to enjoy a day with someone I love because I had access to a wheelchair. Wheelchairs are freedom. Mobility aids are freedom.

Say it with me! Wheelchairs aren’t sad! Mobility aids aren’t sad! Mobility aids are instruments of freedom!

[extreme-dyke-syndrome]

GUESS WHO STARTED HIS MALL DATE OFF BY GETTING A COP TOWED????

You're not more important than me because your legs work and you have a gun <3

[extreme-dyke-syndrome]

Get the mobility aid. Stop waiting for one singular moment to perfectly prove that you're "disabled enough."

[extreme-dyke-syndrome]

DISABILITY AND KINK! (18+)

Hi friends, the other day I had a realization: as someone with a degenerative disability, my ability to engage in kink and my capacity for doing so is gonna look different and lessened as time goes on. I'm trying to look at it more as a limitation rather something that will prevent me from kink, and honestly as a reason to maybe just get more creative, but I'm still struggling a little bit with coming to terms with the whole thing.

If you're a physically disabled person who does kink, ESPECIALLY if you have a degenerative disability, I'd love to hear from you. I think I really need community here to sort out what this aspect of my expression may look like going forward and to hear what it's looked like for y'all. I know it's a personal subject, but anything you'd be willing to share would be SO appreciated. I especially welcome and encourage DMs if anyone is up for that.

I love y'all <3

[extreme-dyke-syndrome]

DO YOU WANNA HELP YOUR DISABLED NEIGHBORS?

Rake up the wet leaves before we eat shit on the sidewalk! Your city or town should be doing it, but why would they??

[extreme-dyke-syndrome]

10 and 14 for the ask game? :)

10. Probably that what I have is degenerative, which means it is going to get worse! So like, bear with me, I'm also figuring it out and it is Very Scary.

14. I got a wheelchair! I'm still pretty terrified to use it, especially without help. But I learned how to do a wheelie and I'm stoked for that :)

[extreme-dyke-syndrome]

12 14 and 20 for the disability ask game?

12. I'm that like, peer reviewed kind of diagnosed. It's pretty obvious that I have EDS, but I know doctors won't take me seriously. My PT also called it, and they've had more up close experience with my joints than a rheumatologist would get.

14. It was a wheelchair day, and Person I'm Seeing carried the wheelchair and then me down a full flight of stairs so we could run (perhaps bad wording) to the corner store. I'm very lucky to have them.

20. I do! I have several friends who use mobility aids or have various reasons for their chronic pain. As is the only way I meet people, it was all punk shows, mutual aid events, and the internet.

[extreme-dyke-syndrome]

2, 11, and 18 from the ask game?

2. I need glasses, but I don't have any, whoops! Setting up an optometrist appointment feels like So Much.

11. I'M SO TIRED OF HEARING I'M TOO YOUNG FOR IT! MY BAD JOINTS DON'T CARE ABOUT MY AGE!!!!!! They gave out last October without checking my ID, actually.

18. I actually live alone! I'm a system and they help me sometimes, but we got one body to work with.

[extreme-dyke-syndrome]

The worst feeling is when you see a cool mobility aid user in public and it's a day when you aren't using a mobility aid, devastating every time that they will never know what a cool cripplepunk you ALSO are

i love when i see another cane user/ disabled person in public and we make that eye contact of solidarity

like yes!! you are like me!! i am like you!!

[extreme-dyke-syndrome]

If anyone maybe wants to throw an ask my way?

✨physical disability / cripple ask game✨

1. do you use any mobility aids? if yes, show us!!

2. do you use any type of disability aid other than mobility aids? (service animals, splints, glasses, inhaler, hearing aids, nebulizer, glucose monitors, hearing aids etc.) if yes, show us!!

3. if you have chronic pain, what’s your “normal” on the scale and what do you consider a good day on the scale?

4. if you have chronic fatigue, what’s your “normal” on the scale and what do you consider a good day on the scale?

5. what’s the worst part about being physically disabled?

6. what’s the best part about being physically disabled?

7. what’s your latest horror story from interacting with medical professionals?

8. what’s your latest horror story from interacting with able bodied people?

9. what is the worst thing an able bodied person has ever asked you or said to you?

10. what is something you want other people to know about your physical disability/disabilities?

11. what is something that you’re incredibly tired of hearing about your physical disability?

12. are you diagnosed, seeking diagnosis or self diagnosed? (i am pro self dx btw)

13. if you don’t have a diagnosis, do you want one, why/why not?

14. what good has happened recently related to your physical disability?

15. when and how did you discover the cripple punk movement?

16. have you always been physically disabled?

17. when did you start to consider yourself physically disabled?

18. do you have a carer? if yes, what are they like?

19. do you consider yourself visibly disabled? if yes, how does that affect your interactions with strangers?

20. do you have other physically disabled friends? if yes, how did you meet?

this ask game is for physically disabled people only

[extreme-dyke-syndrome]

A disabled woman fell on the bus I'm on and I'm literally the only one who listened to her and didn't try and pull her up when she said she wanted to sit for a second, or crowd her saying what she should do next.

Can we actually listen to disabled people maybe? This is exhausting.

[extreme-dyke-syndrome]

Some amazing hip pain emotes from @k9emote! Never seen someone acknowledge inner hip pain before, that shit KILLS me.

Hi, I saw you did some really cool pain illustrations, and I was wondering if you had ever done any for hip pain at all? I get pain on both the inside and outside of my hips and never really have a way to illustrate that to friends.

I've made quite a few, here you go !

((please credit by putting k9_ before the emote name))