Latest Posts by zylahbee - Page 3

STUNNING CRIES

Bloom

I’m practicing painting and I’ve been in a winx funk lately

It really sucks that structural ableism makes it hard for disabled people to connect in person because let me tell you some of the best advice I’ve ever heard in my life is from disabled people.

It’s nice talking to someone who doesn’t want to fix you just wants to listen and commiserate because yeah things are shitty and it’s not fair

intersex person: yeah my parents agreed to put me under surgery as a baby because my doctor thought my genitals made me ugly. they feel numb half the time. sometimes i can’t tell if it’s blood, discharge or piss down there. i feel violated in every sense of the word. i can’t look below the waist without wanting to throw up

person you thought was safe: lmao imagine being so privileged you complain about getting surgery that some would die to have lollll #cis privilege

oh wow, i love that honestly. it put into words exactly how ive felt about my acceptance of being disabled.

"Acceptance isn’t defeat: It’s a declaration of self-respect under irrefutable circumstances. This is where you are and you’re going to make the best out of every moment of it."

Ilana Jacqueline "Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms"

I wish health professionals understood that because I am disabled and in pain so much it takes a toll on my mental health...

that doesn't mean I have somatic symptom disorder

thanks for coming to my Ted talk

childhood potions and spells making my beloved

🪲🐞🐌

Kid-friendly interaction only please!

X, X, X

X, X, X

X, X, X

Sometimes, I still feel so able bodied.

Like the aches and pains are quiet for just a moment long enough for me to remember what freedom I used to have. It's almost like if I yearn for it hard enough, I can have the old me back. The me that could still achieve all my dreams. The me that had no idea what was coming and how much it would all cost me.

Somedays, I still feel the urge to live the way I could before. Carefree and boundless. God, I can almost taste it.

i really cannot understand how people see disabled life as this glamorised lazy life. i genuinely cannot wrap my head around this.

how could ANY of what i go through be seen that way i just dont get it.

“consistency is key” doesn’t apply to many disabled people.

going to the doctor and having them tell me that, and that i need to stick to a schedule they have deemed appropriate is completely comedic.

what about the fact that my health and ability to do anything is a constant gamble? it can change drastically and almost instantly at any given time.

what about how right now i can stand up and make myself breakfast, but by lunch time? who knows. i may be unable to even sit up.

how do u listen to me explain that i dont have a daily or weekly schedule because of how unpredictable my health is, and reply by giving me a schedule.

do you not think i have tried to stick to a routine and schedule like all the healthy people around me??

all i see is people with consistency. i grew up thinking i was broken because i couldnt. i have pushed myself to breaking points trying to fit your mould of success and health.

im sorry if you experience this too. im going to make another post about what consistency can look like for me and other disabled people. because while we dont fit the classic definition of it, there are ways we can make our own version. i wish doctors would listen to me and would help me find my version instead of insisting on theirs, but they havent, so i wanna try help others find theirs. prt. 2 here (now going to make multiple more posts on this topic lol)

i get people telling me im a nihilist sometimes but im really not. i just dont shy away from talking about the “negative” parts of life because i think its an important step towards change.

i dont think we are doomed, nor do i think nothing matters. im angry. im upset. and i want change. theres a difference.

i think its dangerous to loop all angry people into nihilism.

YES YES YES. it is incredibly hard to understand our own bodies and feelings.

this is why we need doctors to really educate themselves by taking the time to listen to us and learn from us. a standard medical textbook isnt going to explain the medically complex to you, only working with medically complex people themselves can.

“consistency is key” doesn’t apply to many disabled people.

going to the doctor and having them tell me that, and that i need to stick to a schedule they have deemed appropriate is completely comedic.

what about the fact that my health and ability to do anything is a constant gamble? it can change drastically and almost instantly at any given time.

what about how right now i can stand up and make myself breakfast, but by lunch time? who knows. i may be unable to even sit up.

how do u listen to me explain that i dont have a daily or weekly schedule because of how unpredictable my health is, and reply by giving me a schedule.

do you not think i have tried to stick to a routine and schedule like all the healthy people around me??

all i see is people with consistency. i grew up thinking i was broken because i couldnt. i have pushed myself to breaking points trying to fit your mould of success and health.

im sorry if you experience this too. im going to make another post about what consistency can look like for me and other disabled people. because while we dont fit the classic definition of it, there are ways we can make our own version. i wish doctors would listen to me and would help me find my version instead of insisting on theirs, but they havent, so i wanna try help others find theirs. prt. 2 here (now going to make multiple more posts on this topic lol)

i am so sorry. the being labeled “non compliant,” i understand that so much. they dont see us fighting for our health every day. they only see us for a short appointment or hospital stay and think they can judge us based on that.

im so very glad you have that nurse. 💕

“consistency is key” doesn’t apply to many disabled people.

going to the doctor and having them tell me that, and that i need to stick to a schedule they have deemed appropriate is completely comedic.

what about the fact that my health and ability to do anything is a constant gamble? it can change drastically and almost instantly at any given time.

what about how right now i can stand up and make myself breakfast, but by lunch time? who knows. i may be unable to even sit up.

how do u listen to me explain that i dont have a daily or weekly schedule because of how unpredictable my health is, and reply by giving me a schedule.

do you not think i have tried to stick to a routine and schedule like all the healthy people around me??

all i see is people with consistency. i grew up thinking i was broken because i couldnt. i have pushed myself to breaking points trying to fit your mould of success and health.

im sorry if you experience this too. im going to make another post about what consistency can look like for me and other disabled people. because while we dont fit the classic definition of it, there are ways we can make our own version. i wish doctors would listen to me and would help me find my version instead of insisting on theirs, but they havent, so i wanna try help others find theirs. prt. 2 here (now going to make multiple more posts on this topic lol)

I PAINTED FOR LIKE 20 MINS TODAY WOOOOO!! first time in over a month

i have so much art i need to get out of my brain its all stuck in there while i cant do any 😭😭😭😭😭

i still have this same migraine ive had multiple hospital admissions for it now im actually losing it

on day 5 of a migraine get me out of here

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.

losing yourself in world events is extremely easy right now. reminder that its okay to take a step back and rest. you need to be able to breathe before you can help others to.

maddening that the media refuses to call nazi salutes what they are. HOW ARE WE HERE RIGHT NOW. fucks sake.

i have such beef with ethical and eco-friendly companies. WHERE IS THE COLOUR 😭😭 why does being eco mean it all has to be beige???? make it fun please i beg i dont want to be beige.

im seeing sooo much misdirected anger and blame in all kinds of communities and im just rahhh its so sad and frustrating because i just want to scream that theyre angry at the wrong people

fellow LSN disabled people, this is coming from a place of much compassion and love. i hear you when you say you’re jealous of MSN/HSN people’s support. how you wish you could have such support. mental health is complicated and it’s hard to see through emotions and trauma.

but i really need you to understand that our higher support needs disabled friends aren’t inherently privileged for having said support. while it may be that if you had that same support your QOL would improve, they most likely need the support you’re jealous of to literally survive.

the point i really want to make here is there is a difference between support for QOL and support to SURVIVE. people die without these supports. that is not a privileged position to be in.

you’re allowed to be upset and angry that you don’t have the life you want and deserve, but please focus those feelings on society and governments. because they are the ones that created a world in which it is so hard for us to exist.

we need to be friends to each other, not throwing around misdirected anger and blame. please take time to listen to MSN/HSN disabled people and learn about their experiences, there are so many people out there begging to be heard.

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.

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.

this i always feel like theres basically two versions of “cant” because sometimes people say cant and they dont actually mean that.. they just mean its hard. and then they assume i also mean its just hard.

it genuinely so. so. no even have word for it. so profoundly exhausting that anytime any disabled person talk about can’t do something—full, wholeheartedly can’t, absolutely can’t, under no circumstance can, if no one help them or do it for them it not get done n they suffer whatever consequence include dying—that it always get FLOOD by so so many “same it SO hard for me but no one help so have to force do by self” n “am i? actually? not low support needs? because all these stuff u talk about so hard for me too n no one recognize it so have do it by self :(“ like you all not get it n not even know you not get it n not sure you all even capable of get it, n, ironically this time do mean, that genuinely, absolutely, no matter what happen, can’t

why the winx club christmas special is the best christmas special

- the other fairies have no fucking clue what christmas is. jesus doesn’t have time for magical space fairies - “where’s bloom?” “oh she’s at magical girl space hogwarts learning to control the ancient power that created the universe…i’m sure she’ll be here for christmas dinner” - “christmas magic? the fuck is christmas magic? that must be the source of bloom’s power. we must steal it” - seriously the entire episode is predicated on a misunderstanding about the meaning of christmas magic - the boys have the rest of the day off due to a conveniently timed plot device! brandon proposes bowling. stella is having none of that bullshit - to stop bloom from getting christmas magic and becoming all-powerful or something the witches summon GIANT FUCKING ICE DRAGONS oh and also a force-field - bloom tries to phone home, but her cell signal isn’t getting through the ice dragon force-field or the hundred bajillion light years between her and home. mark watney was right. at space hogwarts no-one can hear you scream - “bloom, as the fairy of technology it is my duty to inform you that cell phone signals don’t work in ice domes” - who could be behind these giant fucking ice dragons?? could it be the one villain with ice powers?? nah - “okay there are giant fucking ice dragons but more importantly let’s throw bloom a christmas party!” “does anyone know what christmas is?” “shit” - TO THE INTERNET - tecna pulls up the internet and gets a list of extremely vague decorating advice - headmistress dumbledore reveals that the dragons are INSIDE THE SCHOOL!! the demons were within us all along! - turns out that googling “christmas” on the intergalactic hypernet returns some really shitty advice about how to do christmas. shenanigans abound! and so we all learn the true meaning of christmas: friendship bracelets -  "bloom has too many friends. let’s drop the invisibility spell that protects the ice dragons and get the shit kicked out of us instead, because of reasons.” - the villains blow up the christmas tree!! bloom, enraged that christmas is ruined, goes super-saiyan - “the magic of christmas is in your heart” - headmistress dumbledore breaks the first rule of magical girl space hogwarts and teleports bloom’s whole family and a bunch of random earth kids in - a musical number - seriously though is nobody going to question what exactly they’re celebrating if the universe’s equivalent of god is a magical fire dragon that lives in a teenage girl

Looking more like a checklist these days. I want off this ride. 😭

I started using Head and Shoulders ten years ago for itchy scalp and dandruff, and then for ten years I have not had itchy scalp and dandruff, so I thought “why do I still buy shampoo to combat itchy scalp and dandruff when I do not have itchy scalp and dandruff,” so I stopped buying the shampoo for itchy scalp and dandruff and can you guess I have now? Can you predict what currently afflicts me? It’s alright if you can’t because apparently I fuckin couldn’t either

Idk who needs to hear this, but “it could always be worse” is a genuinely harmful mindset. And that applies to multiple situations whether it be mental health or physical health. Yes it could be worse, but it could also be significantly better. You deserve to reach out for help before you drown in your issues. No matter if someone drowns in 4 feet of water or 20, they are still just as dead.