theboybrickwithoutastick

[theboybrickwithoutastick]

I knew things were bad

I knew things were getting bad,

When things started to slow down,

When I felt like I was going mad,

When I thought I was the clown.

I know things are getting bad,

When I start to do things sitting down,

When I am constantly crying and mad,

When I act like I wear the crown.

I know things are really bad,

When I can’t find the care to frown,

When I can’t even try to be mad,

When I can’t even think of the clown.

I knew things were getting bad, when I saw you sitting there,

Why didn’t I share words to be had, why didn’t you know I care.

[theboybrickwithoutastick]

btw, shoutout to disabled people who don’t do everything right.

to disabled people who knowingly do things that will make their condition (temporarily or permanently) worse.

to disabled people who aren’t the ‘perfect’ disabled person that does everything possible.

to disabled people who refuse to push themselves too hard or try to live up to able-bodied standards, and to disabled people who (knowingly or not) push themselves too hard and suffer because of it.

able-bodied people seem to struggle with the idea that disabled people can do whatever they want with their bodies. they seem to think disabled people should be doing what’s best for them 24/7, and should never do “bad/wrong” things.

disabled people deserve respect and autonomy, always.

[theboybrickwithoutastick]

And then you do talk about it, and you get compared to other people with visible disabilities and ones that affect them differently and then you get told you don’t look sick or like you’re hurting and then you’re left more upset than you were before. Or they just say you’re lying. That’s also great.

The thing about being disabled at the "prime" of your life is that you just forget sometimes that other people...aren't?

I eat well and take care of myself. I workout daily for at least 20 minutes. My hygiene is good. I keep up with my chores and responsibilities, and my studies as well as anyone in my eyes could. I get to socialize and have a seemingly stable life and work/life balance.

But I have to use the elevator more often than not because climbing 4 floors gets too much on my knees. I get migraines regularly that leave me unable to look through the window. My brain fog gets bad even when the pain isn't and I can't work or else I'll cry from the frustration bc it won't be productive. My hands hurt if I grip anything too long or too hard. I get dizzy spells and vertigo too often and it's not fun. I could go on really but the point is-

You can't speak about it with any of your peers. They don't get it. They don't see it. It's an invisible disability and they can't see it even if you run your mouth and explain a hundred times. They. Just. Won't. See. It. You hold up well and you sound well and you put on a smile and no matter how much you try to explain that you're struggling nobody believes you because you look fine.

And isn't that depressing?

[theboybrickwithoutastick]

collection of useful things tumblr has taught me:

even if you can't fall asleep, laying down with your eyes closed will still rest your body

you don't have to brush your teeth standing up

you don't have to do any chore standing up, from dishes to showering

you don't have to shower with the lights on

if you can't brush your teeth, flossing and a tongue scraper gets rid of plaque and bad breath

if you can't do that, mouthwash kills a lot of bacteria

eating "unhealthy" food is better than eating no food

you can make the same meal everyday for however long you still want it

some pills come in syrups or chewables if you can't swallow them

kids nutritional shakes can be a quick way to get fuel if you can't eat/don't have time

if walking hurts/exhausts you on a regular basis, canes and rollers are for you, no matter how young you are

we have free will—if doing something "out of the ordinary" makes life easier for you, do it

[theboybrickwithoutastick]

Hey fellow disabled people? Please drink some water and some apple or orange juice if you can. Have some potato chips or something to eat. Take a nap. Take your meds. Take a bath or shower if you have the spoons.

The world is pretty much rigged against us, but we deserve to live too. We deserve love and connection and respect and compassion and support.

You are not alone. You are loved and cared for. I care. I wish I could do more than this to support you, but at least I can be here and hopefully help you feel a little less alone and feel a little more comfortable in your own existence by standing with you (although I currently cannot physically stand /lh).

[theboybrickwithoutastick]

nah but fr tho

is it PMS or just another one of my chronic illness symptoms?

[theboybrickwithoutastick]

I know this may sound horrible but I miss when I only had mental health problems because I actually had hope, like I knew I could get better or at least I could control my symptoms, but with an incurable chronic illnes I don't have the privilege of the "it will get better" and it makes me feel so lost, like I'm just gonna have to live with this for the rest of my life, doesn't matter how hard I try or how many doctors I see

[theboybrickwithoutastick]

nah but genuinely. i know the majority of what makes my life harder or what makes my pots act up more or what is going to make it harder to walk and stuff, and even when i listen to those limits and do what i can to make life easier for myself, i still end up losing because it makes up new rules and limits and whatever.

which then leads me to be like what’s the point in trying to avoid the triggers if i’m going to suffer anyways? it’s like the devil you know versus the demon you don’t.

One thing a lot of people don’t understand is I can figure out all my illnesses, what causes flares, what to avoid, what I can do, etc... and stil my disabilities will just up and change the rules completely whenever they want.

[theboybrickwithoutastick]

what if instead of teaching us as kids to “walk it off” or to “stop being so needy” they taught us how to express our needs and concerns and wants and pains in a healthy manner?

what if i had been able to grow up in an environment where concussions and passing out and sprains and broken bones weren’t considered common and therefore of minor concern?

what if we listened to what people say is happening inside their own body rather than our opinion?

what if i was able to get the help i needed to survive?

what if we all got to live our best lives?

man i just need some more spoons. i’ve got too many knives and i’m so done with using forks. i’m tired of the consequences but i can’t slow down and stop using them.

[theboybrickwithoutastick]

maybe i’m in the wrong for wanting to be alive without pain.

maybe i’m the bad guy for wanting a second to breathe so i can try and push past my limit to make you happy.

maybe i’m the villain for wishing things could be better and putting my health and needs first when it comes to the little things.

maybe i’m cruel for taking a step back in my life because my way of life is not sustainable or survivable.

maybe i’m the foolish one for being unable to acknowledge my own pain because i am too focused on trying to heal others.

maybe i’m the problem for being scared to ask for help getting up.

maybe, maybe i’m not the bad guy, or the villain, or the problem. maybe i’m trying to be alive so that i can stay around for the people i want to be around and who want to be around me. maybe i’m tired of surviving, and i want to live.

[theboybrickwithoutastick]

ily disabled people

ily disabled people who are dependent on aids

ily disabled people who are too scared to use aids

ily disabled people who have been bullied out of using aids

ily disabled people who feel like they don't need many aids or any at all

ily loud disabled people

ily quiet & mute disabled people

ily disabled people who "make being disabled your entire personality"

ily disabled people who are punk, goth, emo, scene, grunge, metal, vkei, decora and any "wierd" fashion style (especially if you decorate your aids to match you're the coolest)

ily creative disabled people

ily disabled activists

ily disabled people who need a helper

ily disabled people who want to be independent but can't be

ily disabled people who love your independent

ily disabled people who wish they could have a helper

ily disabled people who feel like you're not disabled enough to be valid

ily older disabled people who help younger disabled people

ily young disabled people who help older disabled people

ily overweight disabled people

ily underweight disabled people

ily disabled people trying to lose weight for health

ily disabled people trying to gain weight for health

ily disabled people with invisible disabilities

ily stigmatized disabled people

ily disabled people who don't feel like they fit into any of these phrases

ily disabled people !!

[theboybrickwithoutastick]

you're allowed, love. you're allowed to hate that you can't do things. you're allowed to despise your own family for denying you anything. you're allowed to be spiteful and you're allowed to be irritable.

you didn't choose this.

and you're allowed to yell.

scream, love.

fucking scream.

I DESERVED MOBILITY AIDS.

I DESERVED HELP.

I DESERVED A BETTER COMMUNITY.

because you did, you did deserve those things.

you're ill.

[theboybrickwithoutastick]

dear parents, if your child has "seemed fine this entire time" but is now seeking out diagnoses, mobility aids, medical help, more doctors, and is sharing their pain more. do not fucking shut them down? even if it ends up being nothing, showing them that support through all of that will seriously help them. if it ends up being something and you're a bitch to them, the joke will be on you and that strain on your relationship will never go away because. you didn't listen.

listen to kids. we tell you what we need, it's not that hard.

[theboybrickwithoutastick]

tw: self harm ? kind of. im just venting

sometimes I purposefully make my pain worse by doing something I know will hurt like lifting heavy things or not using a cane or walking too much. because I need to know that I'm not just imagining it and exaggerating and/or faking it for attention. the same with mental illness

the majority of my life my family would neglect my health issues if they weren't obvious and visible so yeah I think that's why I need constant reassurance that I am in fact ill by making myself feel worse

[theboybrickwithoutastick]

"but i swear I am not ableist"

okay,

have ever thought about your disabled friend when planning things?

do you wear a mask when you're sick and need to go out in a place where there are people?

do you believe a disabled person when they talk about their disability(ies)?

you know being ableist isn't only saying the word cripple, right?

[theboybrickwithoutastick]

Casually daydreaming about the mobility aids I think would help me, ya know, like every able bodied person does.

[theboybrickwithoutastick]

i am in so much random and nonspecific pain