sickest motherfucker up in this joint

Hello! I'm a 22 year old female living with indeterminate colitis. I've plenty of experience with hospital stays and lots of medications, tests and other hospital stuff (PICC lines, central lines, NG tubes- all that jazz), so feel free to ask any questions!

[userboxer]

[beeth0ven]

An Open Letter to Hollywood on the ‘Sick Kid’ Narrative:

Be chronically ill as a teenager or young adult is not The Fault In Our Stars or Everything, Everything or any other cinematic variation of that narrative.  Being sick as a teenager is not romantic. It’s not poetic. It’s doesn’t lead to pretentious relationships and lavish vacations. It doesn’t lead to quirky friends and fun outings. It isn’t a beautifully tragic plot device.

It’s watching people you used to be friends with move on without you. Learning to drive without you. Graduating high school without you. Going to college without you. Dating without you. It’s growing up and, the moment you have some independence, losing it. 

It’s having months and months of overdue school work. It’s having to pick between a passing grade and a flare up, or failing the class but maybe having some stability. 

It’s watching missed milestones pass you by. Watching your life pass you by.

It’s a constant fear of the future. “Will I get sicker? Will I ever be able to work?”

It’s never going to homecoming or prom. It’s not walking at graduation - either because you didn’t graduate or you can’t walk. Or both. 

It’s not chewing unlit cigarettes for the ~metaphor~, it’s going through Morphine withdrawal at 15 and taking the SATs with a drug-clouded brain. Hell, it’s watching people you know smoke pot on rooftops while you lay in bed high on Triptans and Tramadol. 

It’s not a John Green novel. There isn’t any glory in being a sick kid. There’s no scamming Make-A-Wish and sexy lovers. There’s no empathy from teachers or even from parents.

There is something innately alienating about only seeing your experiences portrayed in an unrealistic, romanticized light, especially at that age.   

[crpl-pnk]

for some disabled ppl their disability is a gift that they feel they’re a better person for having & they wouldn’t change it for the world for some disabled ppl their disability is the worst thing that ever happened to them & they’d give anything not to have it for most disabled ppl their disability is neither or both. their feelings are somewhere inbetween or all over the map. completely neutral or shifting between the extremes all of these are perfectly valid relationships to have w/ your disability. none of them are wrong or right or inherently healthy or unhealthy. they just are what they are. if you wanna improve your relationship w/ your disability that’s fine. if you don’t that’s fine too. the only thing that’s not fine is telling someone that their relationship w/ their own disability is wrong

[sunflower-cane]

when an abled person feels the need to bring up how much they do for disabled people, and brag about how they see disabled people all the time and… dont even harrass them…

[chronicchillness]

I just had a fairly long conversation with my Mam about my butthole Life weird dudes

[sienhoornik]

3 for 3 baby!! Yeow, hopefully the last surgery I’ll be getting till they perfect human augmentation ✌🏽 #yeahthatsamorphineface #watovit, (at Tallaght Hospital (AMNCH))

[chronicallyinvisible]

i know being extremely ill is a tremendous burden and i would never truly want to be sicker than i currently am, but fuck i hate being stuck in the grey area of chronic illness. that area of being able to shower yourself most days, of being able to cook sometimes, of being able to walk up a flight of stairs, of being able to drive a car, but also of not being able to work or study, of not being able to stand for longer than 5 minutes, of not being able to walk long distances or play sports or, let’s be honest, have sex. i don’t know where i am or where that leaves me, and what makes it harder is that the line between what a chronically ill person can do and should do is very, very blurry. it’s so, so hard living your life in a constant state of limbo

[fight-until-the-wars-done]

I don’t always let on how sick I am, I try too always pretend that I’m fine. But I’m not. I don’t have the energy to shower most of the time, making my bed is practically as hard as running a marathon. I’m always tired, I constantly feel like I haven’t slept. I’m always in pain. And the funny thing is no one knows. Yeah my family that I live with, and 2 really good friends. But no one else. I’ve gotten so good at hiding, pretending. That even though I feel like I went without sleep for 2 moths, then ran a marathon, in 200 degree whether, without water, and got hit by a truck at the finish line no one knows I’m sick. At this point I could be an actress.

[madeofbees]

The thing about having a chronic illness is that when I say I’m having a bad day and can’t do anything, people want to know why, they want to know the symptoms, and sometimes it isn’t anything, sometimes I just don’t feel good, sometimes it’s a lifetime of symptoms leaving leftovers behind like crumbs in a toaster, and nothing is wrong exactly, but I still don’t feel good and have to spend the day in bed and try to figure out where my spoons went.

[thespoontheory]

Tips for Travelling as a Spoonie

Here are some links with tips for travelling as a spoonie. Beware that some links may include -isms, but are included because they have things that may be helpful.

Long Haul Travel Tips for Spoonies

City Break Travel Tips

General Info

Tips for Travelling with a Chronic Illness

Traveling with a Spoonie

Tips for Travelling Internationally

Packing for a trip

[clockworkcrow]

having any form of tachycardia

me: *does literally nothing*

my heart: YOU WANNA FIGHT?!??!?

[swoony-spoonie]

Someone: “Does anybody have any painkillers?”

Me:

[flares-of-fibro]

~ SPOONIE GIVEAWAY ~

In attempts to lesson the aches and sad days we have, I’m hosting this little giveaway bundle! I ask that if you do not count yourself as a spoonie (someone who indentifies as chronically ill) please don’t reblog.

1st Prize winner will receive:

- 24 Salonpas patches - pack of stickers (your choice between cute hedgehogs and cat/dog/bunny set) - 10ml of Lavender Oil - 21 gram bottle of Red Tiger Balm - small packet of lollies + the natural fruit bear - choice of 2 cooling pads (cat, panda, dog and monkey)

2nd Prize Winner will receive:

- 12 pack of Salonpas patches - 21 grams of Red Tiger Balm - the 2 remaining cooling pads (after placed in freezer great for joints, headaches) - stickers - packet of lollies

Please note:

- you do not have to be following me to enter - re-blogging is one entry, likes do not count - you will need to be okay with giving me your address - this is worldwide; will cover the postage to any continent - if you have an allergy I am happy to exchange the food items  to something you are allowed to eat - URL will be chosen at random

ENTRIES CLOSE September 12th ( UK time )

Winners will be told and announced soon after!

Thank you for a loving spoonie community & good luck!!

[flares-of-fibro]

only a few days left :)

[blondebitchpudding]

If you have a friend with chronic illness,

Give them space when they need it, if they don’t reply right away it’s usually because they are not feeling well

Be sympathetic, even though you don’t understand what they are going through please just try to listen

DON’T make them feel bad for not being able to hang out all the time, i’m sure they are trying their best

It’s hard to have a ton of friends with a chronic illness, so please understand it’s not personal!

[anunturi-gratuite--99-blog]

[chronicchillness]

Throwback to when I was Abigail Hobbs ✌🏾️

[chameleonchild]

Shout out to sarcastic disabled ppl that take no shit and call out ableism with no apologies, never change