awesome chronic

Don’t tell me I talk about my illness too much. Every movement. Every breath. Is a reminder that I’m not ok. That I may never succeed.That I can’t do things that normal people do. That everyday is a struggle. Never ever tell me I talk about it too much.

anonymous asked:

I saw your reblog of the post-apocalyptic ableism post, and I have to say any group that has you should count themselves extremely lucky and I would definitely want you on my team! :)

You mean this post right?

;;;;u;;;; T-thank you so much.

Just…. thank you! *SQUEEZES YOU TIGHT in a virtual hug*

TTT^TTT~~~ You don’t know how much reading that really got to me and means to me! Mahahaha! *still hugging for life*

I’ve had to deal with being hated by society as “that burden on all of us” and with the thought of being so “worthless” that there’s nobody like me in any survival story because the assumption always was that we were killed off first. I’ve had to actually daydream of myself being all able-bodied and perfect in any big adventure because I had NO CLUE how I could ever be part of one as I am… Because I never saw someone remotely close to me being part of one and NOT get “cured” in some way before the end of the book or media.

All along, people like me were ALWAYS those to be “cured” and “fixed” and never really… treated or appreciated as PEOPLE of worth and value and deserving to live unless we are changed into perfect able-bodied and neurotypical people like the rest. That we either MUST change back to “normal” …. or be killed off. That suicide was lauded because we were “so brave” in killing ourselves off so that others wouldn’t suffer because WE dared to live and take up any resources. That ANY “civilized” culture would be exactly like this fucked up ableist and hateful one, so any “uncivilized” culture would be even worse and just straight up strangle us at birth or leave us for death the instant we started coughing or broke a leg. Because it was only the “civilized” ones who dared to let us live and therefore we should be crawling over the shit-stained ground to kiss their feet in complete gratitude for that “amazing and awesome favor” that they “really didn’t have to do at all.”

After being barraged with that all my life (First for being hard of hearing and relying upon technology to hear at all, and then for being chronically ill and progressed to severely so)…. it’s hard to take off all those painful and damaging programming and conditioning that I’ve had to endure from society. All those messages that ripped into my self-esteem and told me that if I didn’t do every goddamn thing I could to please others and make them happy at every second of every day… then they would leave me for good because making them happy was the ONLY thing I had worthy enough to give in barter for any life-sustaining help in return… Because if they weren’t happy, they’d question why I was “allowed” be around and be such a drain on their resources otherwise.

After all that, dealing with that fear of being left alone to die alone because I wasn’t being “helpful and worth any help in return” that is still so insidiously deep that I take any accusation of being “selfish” as a time to panic and hit the red alarm button and do all I fucking can to make them happy again so that they won’t leave me-!!!! After all that…

To even realize what I had to share that was of value to a post-apocalyptic community was utterly revolutionary. That I could actually be a worthwhile contributing member and be loved and accepted by a group in such a “desperate survival scenario” at ALL… that was borderline revelatory enlightenment for me.

And to now read your words about how you’d love to have me as part of your group in such a survival situation. TTT_TTT Why that just breaks me down into happy tears because that’s the validation I’ve always dreamed of hearing and getting! The thing I always dreamed off but in that secretive furtive way like you know you’re thinking about something so taboo that nobody dare speak its name.

So let me just hug you so super damn close you amazing anon and tell you

Thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you to infinity and beyond!!!!!


I needed to read this so fucking much today. TT.TT~~~

Originally posted by couplenotes

Maybe you’re not doing the best you can 

but you’re doing it – with a chronic illness and probably some anxiety and depression about your circumstances 

and that’s the biggest accomplishment ..

so be proud of yourself

even if you complain throughout the day

you’re allowed to do that

you’re not perfect and this is hard – so don’t be hard on yourself, spoonies

When talking to someone with a long-term, chronic illness:

What Not To Do:
PTA 1: So, when were you diagnosed?
Me: When I was 18 months old.
PTA 1: So young! You poor thing! /awkwardly pats shoulder with pity/

What To Do:
PTA 2: So, when were you diagnosed?
Me: When I was 18 months old.
PTA 2: Damn, girl, you’ve been living with this pain your whole life. That’s an unfair deal.

The first speaks of condescending pity directed at me. The second speaks of shock and outrage on my behalf.

"at least you don't have cancer..."

the next time someone tells me “it could be worse, at least you don’t have cancer” i’m just gonna stare at them for a really long time and say something like..

“can you even pronounce my condition? do you even know the treatment protocol? do you know anyone with a chronic condition? or what it’s like to have to live in a body that refuses to work? 

Who taught you it was okay to rank suffering?  Who told you there was a hierarchy of illnesses?

Why does my suffering not count?

Because your too uninformed to care about it? 

That’s not very fair…”

…. like I feel sorry for whoever gets this rant because I am so done and it is SO WELL REHEARSED.   

About my disability...

I have Exomphalos Major, which means I was born with some of my internal organs out.

My mums heart medication caused some of my tummy muscles to not form so I was born with my liver, spleen, intestine, stomach, gall bladder and pancreas on the outside. All of it was put back in except for my liver which gives me a large bump as it is literally my liver and part of my transverse colon.
It’s covered with rotation skin grafts. 

I also have severe scoliosis with kyphosis (100-110 degree curve despite having a rod insertion at 2 years old) and hypercapnic respiratory failure (lung failure).

Spoonie Tips: The 3 Minute Wash

1) Take off your pajama shirt.
2) Wet your usual washcloth/loofah.
3) Do a quick, light wash over your sweaty areas - chest, face, hair, etc.
4) Put on deodorant.
5) Run brush through hair.
6) Put shirt back on.
7) Go back to bed.

The way chronic illness destroys your ability to form and maintain friendships is one of the things I hate most about being sick.