sure fucked up

Parker they/he, not a minor, sideblog to @parkakeet, dealing with chronic joint pain and unstableness, fatigue,dizziness, and tics. looking for advice and support. HSD (possible hEDS), Tourette Syndrome, functional neurological disorder, possible POTS

[talking-tics]

real talk. with my tourettes coming back despite taking my meds as I'm supposed to, I'm afraid of a reassurance of my FND symptoms. I can't afford to lose my mobility again. I really don't want to do that again.

genuinely. last time I got tics this bad, my. FND flared a few days later. I guess I'll have to monitor my tics, keep taking my meds, and call my doctor as soon as I can.

if it continues this way, I may have to talk to my manager and let them know that I may have an issue here soon if this doesn't resolve itself. I'm fucking scared tbh.

[the-fabled-disabled]

so. I've been very inactive on this blog. but here's an update on what's been going on with me recently. hope you've all been well.

[the-grape-entity]

It’s so fucking stupid that underarm crutches are the only mobility aid that’s even decently normalized actually

[binder-masterlist]

would you still recommend shapeshifters if I got a side zipper? I know they’re not always a great idea but i have a connective tissue disorder and a lot of issues surrounding my shoulders dislocating in particular and I’m worried abt getting on a traditional binder….

Unfortunately, I don’t have any personal experience with a side zipper binder so I’m not sure if I’m going to be of the most help. I would recommend asking the @shapeshiftersvt account!

[the-fabled-disabled]

this is a little old but, I bought a shapeshifters binder with a side zipper for this exact same problem and it's fantastic. It's super comfy and I don't notice the zipper and it binds well and it's cute.

it also is so much easier to get on and off without doing some shit to my shoulders

10/10 would recommend

[the-fabled-disabled]

sometimes I stand up and get dizzy and then it passes but my body is still like. off. like I'm a little fuzzy and I need to chill and let my body fix itself but I'm at work so basically I just have to live like that

[the-fabled-disabled]

I made the mistake of not using my cane around campus before now because I'm anxious and now I regret majorly cause it would be so nice to use but it's even more anxiety inducing now

[the-fabled-disabled]

my endless hsd vs whatever fainting problem I have goes like this:

1. sit down in the shower because it's uncomfortable to stand because of my hsd.

2. stand up too quick when I'm done with my shower and get super dizzy or pass out

[the-fabled-disabled]

fuckin. hsd flare up omg

[aethereal-boy]

Disabled people should be allowed to exist in public. Yes, I mean all disabled people.

That includes people with tic disorders.

That includes people who smell ‘bad’.

That includes people who can’t help being loud.

That includes people who move ‘strangely’.

That includes people with bulky mobility aids.

That includes people who drool.

That includes people who struggle with incontinence.

We all should get to exist, however that looks, and go out in public, use public transport, do activities outside our homes. And we should be allowed to do those things without being glared at or having ableist things said to us.

[parttimepunner]

Please note this will also include disabled people who get highly distracted by sounds, are sensitive to smells and otherwise may not be compatible with the above through no fault of their own.

[nondivisable]

disabled people are allowed to have hobbies that clash with our disabilities by the way

I'm allowed to like journaling even if my hand tremors make it so I can't do something as "pretty" as an abled bodied person

I'm allowed to like crocheting even if it's bad for my joints and it takes me double the time it would take someone else to finish a project

and yes I'm trying to switch to knitting which is lighter on the hands, but even that - even fucking using my phone - makes my finger hurts

I'm allowed to complain about it, just like you - specially if you're abled - are not allowed to tell me off about it

it's so hard for us to find joy, you're not allowed to police the small things that help

[the-fabled-disabled]

so like. I said I was probably getting an esa, but like. I didn't talk about why so.

an esa will benefit me and was legitimately prescribed to me, I'm not doing this for fun. basically having an animal helps me keep routines as well as calming anxiety and overstimulation. it also helps calm my tics a lot. when I lived at home I used to pet my cats when my tics got bad to help calm them down.

I know there's a lot of negativity surrounding esas but I'm aware it's not a service animal and doesn't have the same privileges.

I don't need a service animal right now and probably will never get one due to the fact that dogs overwhelm a lot and they're the only animal (and sometimes miniature horses I believe?) that can be service animals. a cat that lives in my safe space is right for me and my disabilities and is a disability aid even if it's not a fully trained service dog.

anyway I hope I get to talk with y'all about the process of getting my esa and share my journey with you! lots of love.

[the-fabled-disabled]

I enjoy my pcp because he generally works on the assumption that I know best about what's happening in my mind and body and that he's just there to help and support me which is rad of him

[the-fabled-disabled]

I wrote an email to my doctor trying to get an esa letter so hopefully that works out. my cats at home always helped me a lot but I can't have a cat here without a letter

[the-fabled-disabled]

omg update. I got the letter

[the-fabled-disabled]

I wrote an email to my doctor trying to get an esa letter so hopefully that works out. my cats at home always helped me a lot but I can't have a cat here without a letter

[the-fabled-disabled]

me: uses the small stalls even with my crutches because they fit and I’d rather not use the accessible stall in case someone needs it

abled people: uses the accessible stall to hang out in for some reason

[the-fabled-disabled]

currently crying because I want to jump on the trampoline so bad but I can’t walk. I guess sometimes it’s the little things that get to you the most

[the-fabled-disabled]

I’m redecorating my crutches before college cause my tics are acting up again and i’m feeling like my legs might start giving soon and I may as well look swag as hell

[the-fabled-disabled]

the final slay

[the-fabled-disabled]

fnd flaring up just in time for college is soooo not ideal. guess I’m learning campus and a new city on crutches. I can walk as of now but it’s difficult and I doubt it’s gonna stay that way.