Notalgia Is So Strange Because What Do U Mean I Long For Things That Remind Me Of The Worst Times Of

i was trying to figure out why I find it so difficult to talk about my illness & disability with new people, or even people from my past, and I realized part of it is that I still feel like a phony? I didn't bring my cane last night and so it felt like I would get called a faker. or maybe that I was really a faker, see I'm out without my cane maybe I don't need it? and then the other part is that when it's a new person I feel like they're going to immediately run for the hills bc I am a huge red flag burden for so many reasons having these problems.

and then I thought about it some more & while some of that is kinda true, mostly I have to kill the ableist in my head. yes, sometimes it will be too much for people. but I have to let them make that choice. I have to just be who I am & let it happen even if it's heartbreaking to not meet new friends or connections. because not everyone will see it that way, and I literally cannot hide it so I have to just exist as I am and let the cards fall as they might.

disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)

what happens to consistency, to habits, when you have a dynamic disability?

i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.

you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.

for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.

for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.

and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.

then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.

understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.

it hurts hearing other disabled people talk about medical mistreatment.

like i am partly grateful to not be alone of course, but i really wish it wasnt a common or even standard occurrence.

breaks my heart.

i miss the beach so much

i had the same experience when i had to use the elevators.

alright lets get this out of the way.

school bathrooms should be unlocked during school ALWAYS

school children should be allowed to go to the bathroom ALWAYS

school children should NEVER have to ask to go to the bathroom, just tell the teacher that they need to go

schools should NEVER question a child on why they need the bathroom

schools should NEVER make jokes about how often a child uses the bathroom

schools should NEVER get angry at children for using the bathroom

NEVER should a teacher approach a child about their bathroom usage.

if there is a concern or problem with a childs use of the bathrooms, the school should speak to their parent or have a meeting involving the parents and the principle.

if there is misuse of the bathrooms, the school should speak to their parent or have a meeting involving the parents and the principle.

you never know what children could be dealing with, whether they have bladder issues, gi issues, mental health issues or other disabilities. some children may be using the bathroom to hide from bullies, or they may have addiction issues.

it doesnt matter. its shouldnt be the teachers job to police toilet usage. only when there is an issue should limits or supervision be put in place, AFTER meeting with their parents and potentially the student to figure out the reasons for such issues.

i know this is really controversial but im really sick of horror stories from kids like me who dealt with the shit that is school bathrooms

Disabled and chronically ill people are allowed to enjoy things and do things they like (if they’re able) while still being sick and disabled. Yes, even if they aren’t employed. Hope this helps.

update i went to the beach that day it was fate

i miss the beach so much

ah yes the fun of will i surprise the doctor with a personal relief method they havent heard of yet 😇

I feel like most able bodied people see wheelchairs as the worst thing that could happen to a person. When I discuss my want to have a wheelchair for various reasons, most peoples first reaction is to be surprised that I could voluntarily consider that.

But what they fail to consider is that, unlike them, I very much hate walking. It causes me pain and fatigue, it is a miserable experience.

So to any able bodied person reading this, yes some wheelchair users like walking, some want to gain that ability back, but that does not invalidate the feelings of wheelchair users who absolutely hate walking.

ITCHING to do stuff. ANYTHING lemme cook or clean or write or sew or draw anything please im so bored