Despite my desperation for a new mobility aid, it's sad to realize how many shops I love are so inaccessible that I'd struggle to navigate them.
Almost all of my favourite shops I currently go to regularly are down flights of stairs, cramped, or both.
Gonna fuckin suck to figure out when I'm lucky enough to get em
The tension between me and GETTING A FUCKING WHEELCHAIR
Anyone else feel like they just gotta deal with their disability themselves? I haven't told my parents who I fuckin live with that I can hardly walk if I want to be able mentally/physicay function during or after without a cane, and even then it's not the ideal aid for me.
I'm convinced if I regularly exercise by myself (which I forget, or am too exhausted to do quite often), then I'll be fine enough that I dont need help or to tell them.
Tbh I'd just stay inside constantly until college (next september), but my mental health is already awful with the limited human interaction I have, so idk.
Aaaaaaaa
I'm a disability advocate (I think you should be disabled)
really though a lot of people put themselves through a lot of pain or inconvenience because they have decided they aren't Bad Enough to need help with something and it sucks. so I truly do want to encourage identifying as disabled. you can get a cane if you think you'd only use it on the really bad days or if the deciding factor is that it's your favorite color or if you think maybe it would make one single task a little easier. you can use a screen reader if it's more convenient to hear text spoken to you rather than reading it. you can get cut-proof gloves, or a chopping gizmo, or pre-cut ingredients if it would make you feel safer when cooking because you're a little clumsy. you can use a wheelchair if it would just make you less tired.
as someone who struggled (and struggles) with feeling Bad Enough to justify the tools I need: it's okay if you don't think you need them. A want is enough. A passing "oh, that would be useful" is enough, especially if it keeps happening. you're allowed to want things to be easier and you are allowed to make them easier. I love you.
I went to see my friend today after not being able to see them for a month and oh my FUCK it put me in spoon debt.
I was walking for like, 3 hours, and am now lying in bed cuz mmmmmmmm nerve pain.
Me when I have an "everything hurts" condition and then everything hurts
This might be a bit TMI but my biggest kink is getting through a day without nerve pain
Me: I know that exercise would improve my chronic pain
Me: physically cant get myself to exercise because of both the chronic pain and adhd
I am in a PRISON
Alright.
Personal positivity today!
Because I can't fuckin, feel shit forever.
I have a trial shift at a cafe tomorrow. It's like an hour and a half away from my house by train, but it sounds like a decent job.
Also i found a hella cool secondhand jacket online so thats a win!
Fuck positivity.
I remain unemployed and iv had nerve pain in my legs all day.
Being physically disabled with a long distance partner is weird especially cuz iv known my girlfriend for years before i became disabled.
Like yeah i know we havent met in person so i will yap about my stupid body because i dont want you to be surprised if the day we meet I'm hanging onto some crutches or sitting in a wheelchair
Alright.
Personal positivity today!
Because I can't fuckin, feel shit forever.
I have a trial shift at a cafe tomorrow. It's like an hour and a half away from my house by train, but it sounds like a decent job.
Also i found a hella cool secondhand jacket online so thats a win!
Wow OK.
I came to the really sudden development that I will near certainly benefit from a wheelchair.
I went out the past two days, two of my friends have insane schedules and so I exploited the perfect line up of days off to see them both.
The first day was fine, I wasn't walking as much as the second, so not much pain.
The second, yesterday, I was walking around a city for about 5-6 hours. I was really shaky half the day, mentally very not present, and I barely remained standing on the way to the train.
Im currently ill equipped to go out, only havint a cane. Though i thought for the longest time that when I finally got something more adequate, it would be crutches, maybe a rollator at the most.
Nope. Iv been in bed most of today, and even when not, iv been sitting. I have been actively able to do anything for maybe two hours, and that was out of necessity, because to my parents knowledge I'm able bodied and have to act like it basically.
At this point I'm just like, fuck. Nevermind the first trip, yesterday would have been so much easier if I had a wheelchair. Today would be easier if I had a wheelchair. Because I probably would have been able to reduce fatigue by not having to walk so much to get around the city yesterday.
Admitting I would benefit from that feels weird. It took me a flare so bad I was limping for a day and experiencing constant shocks of nerve pain in both legs to get a cane. It took me till 4 months ago to go "yeah I need crutches" but SO SUDDENLY I just came to the realisation i could benefit so much from a wheelchair.
And the worst part is I CANT GET ANYTHING FOR A YEAR.
As my parents think I could be cured by exercise, and I'm scared of doctors, the idea of approaching my parents about it is a no go, and I can't even get myself to go to a medical professional to get a reccomendation for anything.
This all feels so fucking weird.
I don't remember who the fuck my moots were and who I just stalked on tumblr cuz I loved their posts but I hope whoever I was moots with on @neilgayman69 finds my account
People stop acting like young cane users are using them as an accessory PLEASE.
There are so many occasions where I go out and nearly everyone around me disregards how heavily I rely on it and acts like I will be fine if they act like assholes.
Obviously there are nice people, but there's also people who act like I'm invisible or my mobility aid serves no purpose. Which, as someone who is so fucking heavily reliant on it just to be able function in the world, is such a mental and physical pain.
Please can people JUST PAY ATTENTION TO MOBILITY AIDS.
Iv spend a lot of the last months being miserable about my physical decline but goddamn my brain sucks too lmao
I love science, and maths. I spent a year dragging myself through higher level maths before I had to drop to ordinary because I just wasn't good enough. I did biology for fun in school. I always, always wished I could have done higher maths, physics, chemistry, higher irish, applied maths. I wish I could have had more options. But I spend my entire secondary school time with undiagnosed adhd, autism, dyslexia, and possibly other mental disabilities that I never got help for.
Along with mourning a life of normalcy in terms of my physical abilities, I mourn the years I spent struggling three times as hard to get half the result my peers could. I still do not think I am academically intelligent because I spent years struggling. Years putting in more effort and seeing less results than anyone around me.
There was a guy in a couple of my classes I payed too much attention to. He did all the "smart classes". Higher maths, applied maths, two sciences (I think physics and chemistry). In a lot of ways I found similarities between us. We both sat out of p.e., took every chance to avoid it, were always reading. He talked so little practically no one heard him speak more than once in two years, I only spoke to others when I needed to. I spent two years comparing myself to him because I felt like he was the smarter version of me. He felt to me like what I could have been, were I less disabled. Even now that I'm out of secondary school and going to college next year, I can't help but think about how he likely could choose almost any college, any course in the country. Meanwhile I had 3 options I could reasonably achieve to do the course I wanted.
I'm 18. I'm sick of mourning what I could have been. What I could have achieved. Why do I have to spend my life mourning.
I might be absolutely fucking miserable thinking about how I can't get crutches for another year
I might barely want to leave my house due to pain
But I don't care how much it makes me flare up or hurts my hips later I will continue to dance around my kitchen while I do chores until the gods decide to fuckin stop me
It's really eye opening to talk to someone about what's wrong with you and for them to confirm how bad it is.
I asked in r/hypermobility about if you need a GP referral to get on the road to figuring out what's wrong, and just generally about what to do first, and someone replied about how it can be expensive and not really worth it, since hypermobility isn't curable, and at 46 they were fine.
I know, and said as much, but also said that while I know that, I already need a cane so I can leave my house for any length of time and not feel beyond awful, which sucks at 18, and I'd like to make sure I can still get around by the time im fuckin 30.
The last but was somewhat of a joke, but they actually took the fact seriously.
Like they were a bit like "oh- yeah you need to see a specialist if it's that bad"
They actually treated it LIKE IT WAS BAD.
I'M NOT USED TO THAT.
I mean sure I use a cane rn, and I'll probably get crutches next year or so, and it kinda dictates when I go out or not. But like. I just figured that was the case for a lot of young hypermobile people.
A proper fuckin adult said it was bad. My patents don't even think so (though they don't know about the cane)
LIKE GODDAMN
