extreme-dyke-syndrome

[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))

[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))

[extreme-dyke-syndrome]

Wheelchair advice needed!

Does anyone have any experience or knowledge on those attachments for wheelchairs that can convert them from manual to electric? It seems maybe the most feasible option for me, but I also don't know much and would LOVE advice.

[extreme-dyke-syndrome]

I've said it before and I'll say it again

There is nothing wrong with wanting attention.

[extreme-dyke-syndrome]

This old guy with the most powerful grandpa vibes I've ever seen saw me on my crutches and told me to take care of myself and that I'm still "cute as a button." Usually I'd be grossed out by the cute comment, but the Big Grandpa Energy made it so heartwarming. Shoutout bus grandpa, I love u <3

[extreme-dyke-syndrome]

Sent this to a mutual aid chat I'm in and no one laughed, bottom tier cripple moment tbh

[extreme-dyke-syndrome]

Tumblr user @extreme-dyke-syndrome sure has an incredible talent for oscillating between the most in-depth commentary on disability and stupid little jokes via twenty posts in one day, and vanishing for at least weeks at a time

(It's me, I'm tumblr user @extreme-dyke-syndrome)

(This is my apology)

[extreme-dyke-syndrome]

@microcosmiclymbic had an amazing addition to this in the notes!

Able-bodied person/people: make sure you are doing self-care along the way, ESPECIALLY if you do caregiving! Inter-abled relationships do pose unique challenges that are nobody's fault, but that can be taxing if you do not give yourself space and care in response to them. You are not a bad person if you feel your inter-abled relationship takes some kind of toll on you or has some negative impact on your well-being. Feeling those feelings is not a bad thing, they just mean you need to take care of your own needs as well as the other person's/people's. They only become a bad thing when they manifest as mistreatment of the person/people you are caregiving for. It is okay to have a hard time, able-bodied people need accommodations too, and for everyone involved, it is best that you also accommodate yourself.

I apologize for leaving the wellbeing of able-bodied partners out of my original post, as their well-being is also a very important factor of things.

Inter-abled relationships!

I've been thinking a lot about inter-abled relationships, and I have things to say to both (or all) sides of them:

Disabled person/people: you need to internalize that you are not a burden. If this is (a) safe person/people for you, then the love and safety they are extending to you will include a willingness to do the things you need help with and that they can do to accommodate you. If this person/people is/are not safe, you need to internalize that you have done nothing to make them act this way. Your disability is not intentional, it is not being inflicted on them, and you deserve the help you need.

Able-bodied person/people: It is crucial that you do not make them feel like a burden. They may feel guilty or ashamed for asking for what they need. You need to make it clear that your love and care for them includes caring about their safety and wellbeing, whatever that may include (that you are able to do for them). You also need to make it clear that you see them as a person, not just a disability. They may magnify what a toll or weight their disability has on your relationship, and you should do your best to help them quiet those fears. Also, you may get really shitty comments from people around you about your relationship. I'm not saying punch them, but I'm not NOT saying that.

[extreme-dyke-syndrome]

Person I'm Seeing (who's gonna see this hi) did a double-take when I told them my wheelchair had brakes, so uh if you don't think there needs to be more societal representation of wheelchairs, ask an able-bodied person how wheelchair users stay still on hills maybe.

[extreme-dyke-syndrome]

The comfy index*

*actual comfiness WILL vary, but it'll make things suck less

hi, you there who are or are thinking about spending all day in bed, it’s okay, I’m not telling you to get up. I’d just like to do a quick check in to make sure you’ve got everything you need to be comfortable and safe.

Have you gotten up to take any meds you need?

Do you need to open or close your windows or curtains/blinds to make your environment nicer? (Fresh air, keep the cold out, sunlight/darkness)

Do you have a water bottle or a glass of water easily accessible? (Can also be juice, cordial, a meal replacement drink or anything else)

Do you have any over the counter or prescription as required meds you might need, like painkillers or anti nausea meds?

Is your phone or laptop charged?

Are you wearing comfortable clothing?

Do you have enough blankets/pillows to be warm and comfortable?

Do you have any snacks like fruit or chips or muesli bars in case you can’t get up to make a meal?

Are you able to change positions in bed (or sit up if you’re able)?

Do you have any regulation tools like fidgets, ear plugs, or journaling/art books or low energy hobbies you might want?

Are you being gentle and patient with yourself and your body today?

Thanks for doing this check in with me. I like to have some of these things prepared on my nightstand, or all together in the same space in my room so I don’t have to do as much work on low energy days. It can also help to have someone else prepare or get these things for you if you’re unable. Hope you have an uncomplicated day.

[extreme-dyke-syndrome]

I think that it's really important for people to realize that being disabled is traumatic. genuinely. your body and brain feel like they are breaking down and wrong. you are in constant heavy stress from stuff like chronic pain. most disabled people i know have a somewhat regular emotional break down from the trauma of it all. and we are expected to just smile through it by society, to not be in the way, to not be an issue.