I Still Have This Same Migraine Ive Had Multiple Hospital Admissions For It Now Im Actually Losing It

absentmindedly doodling. i always have a nostalgic soft spot for the season 1 dynamics in winx club.

gave up on home care and went to hospital on day 15 😭

on day 5 of a migraine get me out of here

i miss the beach so much

chronic pain diagnoses are all like yeah we don't know what this is or why it happens. we also don't know how to treat it. good luck out there soldier

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

I know I'm shouting into the void with this one but like. Genuinely so many low support needs people dont understand what it's like having even medium support needs. Like I am entirely dependent on other people for many of my needs. I can not see a doctor without someone else scheduling the appointment, taking me there and doing a large amount of the communication for me.

If my caretaker had not been accepting of me being trans and invested hundreds of hours into psych appointments and taking me to my endocrinologist and doing all the paperwork involved with my name change and literally taking a week off work to stay with me in the hospital for surgery etc i would have just like. Never transitioned. My ability to transition was entirely dependent on a singular person and that's what a lot of other parts of my life are like as well. and that's fucking terrifying and a great way to be neglected and abused in ways that are horribly hard to get away from.

I dont drive, I dont work, I struggle to leave the house at all, I dont fucking communicate with people majority of the time. The things that are hard for you? I probably can not do them to begin with. No one in my family lives even close to a comparable life to me. None of my irl friends do. I'm incredibly isolated.

And then I go online and see people rant about how easy MSN and HSN people have it because we just get everything we need and how because people can tell we are disabled everything is so easy because none of you even manage to listen to us talk about the neglect and abuse and trauma we face/d. I see people angry at their (more) disabled siblings for getting care they need to survive instead of mad at society for creating a system where its incredibly hard for families to take care of both a higher support needs child and another child.

And I see people who live completely independent lives who work and drive and make their own doctors appointments and grocery shop and travel by themselves call themselves MSN (I could go on a rant about how that's also often the fault of LSN influencers for not leaving a lot of room in their own community for legitimate struggle but that's for another day).

I just want my needs met. I want to be able to decide where I live. I want choice in my care. I want to be able to have community with those like me. I want others to realize I exist and leave the words i have to describe my existence alone. I want others to listen to what I have to say about what my life is like.

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

really struggling with this atm.

ive lost all the strength i fought so hard for the past two years. it doesnt seem fair that it can all be taken away so fast.

im exhausted. trying is exhausting.

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.