i-the-spoonie - Tumblr blog

[i-the-spoonie]

every time someone talks about someone "faking disability to live on welfare" or anything to that effect i think about how my mom worked in law and directly knew of a case of a guy who had terminal brain cancer with an estimated few months to live and got rejected the first time he applied for disability income. like, he was 100% going to die and that wasn't disabled enough to not have to jump through a million hoops and get lawyers involved. non-disabled people "living off of welfare" is such a non issue because i cannot bring myself to care about the like, 3 people who maybe successfully do it compared to the thousands of people rejected who need aid

[i-the-spoonie]

PSA to stores:

If a wheelchair user is terrified to move around in your store due to clutter, you’re doing it wrong.

[i-the-spoonie]

apparently theres 5 threat responses documented now!

from a trauma & dissociation workbook page our therapist shared

[i-the-spoonie]

shoutout to people who don't have a "before" the trauma.

shoutout to people who don't have any sweet or nostalgic childhood memories. to people who don't remember enough of their childhood to know what the before was like. to people who lost their innocence before they ever learned the word for it. to people whose pasts were too painful to keep around in any form. to people who only knew trauma, and don't have an idea of what life would be like without it. to people who can't long for "the better days" because there weren't any.

you deserve a good future. i hope it's there for you soon.

[i-the-spoonie]

[i-the-spoonie]

The thing about becoming disabled is that it touches every part of your life—which means it changes every part of your life.

Your own self image will likely be completely broken down. You are not who you thought you were, and your life will not be what you thought it would be. It’s up to you to decide how you want to rebuild yourself. It’s up to you to figure out how to even begin to do that.

Likewise, the way you see the world around you will change. You start viewing everything through a different lens. You have to decide how to interpret what you see, and what you do about it.

You learn which parts of you are intrinsic, unchangeable. In some ways, you become a new person. You learn things about yourself and about the world around you that other people might never have to learn.

[i-the-spoonie]

my new thing whenever an embarrassing memory jumps up out of some backwater neuron to t-bone my present-day thought process is to declare a statute of limitations. like i can burn down an entire building in the state where i live and the law deems it both unfair and illegal to prosecute me after six years have passed, i think that thing i said in high school can be expunged from my record.

[i-the-spoonie]

When someone has a chronic illness or is disabled and can't work, they say a few common things.

It must be nice to sit around all day/sleep all day.

I wish I could sit around all day and not work.

I wish I could sleep all the time.

They don't want to sleep as much as we have to. They'd feel sick and sluggish.

They don't want to sit around the house all day not doing anything. They'd be bored out of their fucking skull.

It's so unbelievably fucking frustrating, but there's a fundamental lack of understanding.

They liken our lives to a vacation, imagining that it's fun and relaxing and we can do whatever fun things we want to all the time.

In reality, it should be likened to an extended hospital stay. You can't do anything and you feel like shit.

[i-the-spoonie]

anyone else ever wish they could lie down harder? Like, I'm already horizonal, but I need more horizonal. I need to be absorbed by the floor. I think that would fix me

[i-the-spoonie]

[i-the-spoonie]

perfect representation of what it’s like to be bed bound because of chronic illness /disability.

[i-the-spoonie]

How the fuck am I supposed to explain chronic fatigue to someone??? Like I need at least one nap a day to even kind of function in addition to going to sleep earlier than most people might. I am constantly exhausted, I wake up exhausted and I end the day absolutely drained and then I’m expected to do it all again the next day. How the fuck do I explain that sometimes even doing nothing is exhausting? How do I explain that I can’t do things sometimes because I’m so far past tired that I’m essentially not functioning? How do I explain to someone who says they get exhausted but can still function when they’re at that point that my exhausted is completely and utterly different?

[i-the-spoonie]

As a wheelchair user I'm trying to reframe my language for "being in the way."

"I'm in the way," "I can't fit," and "I can't go there," is becoming "there's not enough space," "the walkway is too narrow," and "that place isn't accessible."

It's a small change, but to me it feels as if I'm redirecting blame from myself to the people that made these places inaccessible in the first place. I don't want people to just think that they're helping me, I want them to think that they're making up for someone else's wrongdoing. I want them to remember every time I've needed help as something someone else caused.

[i-the-spoonie]

Non spoonies don’t get it.

[i-the-spoonie]

“Living with anxiety is like being followed by a voice. It knows all your insecurities and uses them against you. It gets to the point when it’s the loudest voice in the room. The only one you can hear.”

— healthyplace

[i-the-spoonie]

[i-the-spoonie]

me: I'm done grieving, I already accepted my illness and all it brings with it, it's totally ok

also me on a random tuesday: my life is never going back to what it was, I'm never going to be able to do the things I loved the most the same, it's over and I gotta learn to live with that but it's kinda impossible because I'm so young and I had so many dreams and so many things I wanted to do that I can't anymore, at least not without all this pain and suffering