spoonie livin'

my name is natalie and i'm a chronically ill kid. let's be friends.

[chronicallyrecovering]

to my friends and followers with rare diseases, diseases related to mine, or who think they have a disease like mine but are not sure because of the many obstacles that come along with the diagnostic process:

it is okay. you are part of this community. you are allowed to share your experience. you are allowed to contribute and relate to people with similar diseases. many of them, especially in the spoonie community, will try to offer the help they can in your process. you are not alone in this.

[sicklord]

Empathy cards by Emily McDowell Studios! i saw these on facebook and seriously, these are amazing for all illnesses. Link here: http://info.emilymcdowell.com/empathy-cards-for-serious-illness/

[neurowonderful]

On assumptions of ability.

Don’t tell me what I can’t do.

If I can’t do something, I will tell you.

Don’t tell me what I can do.

There are things that I can do with relative ease one day but struggle with immensely the next. My abilities fluctuate. This is true of all people, it is just more obvious in my case.

I know my limits.

Sometimes I push them because I’ve determined that the thing I am doing is worth the recovery time. This is okay. You don’t need to intervene or save me from myself.

Don’t make assumptions. Don’t make decisions on my behalf without my permission.

I make my own decisions. It may take me some more time to get there. I may ask you to phrase things more simply, or differently, or to offer only one option at a time, but I will decide for myself.

If I decide to defer to someone else’s decision, that is a decision in itself.

Please do respect that I know myself, my limits, and my abilities best. Please do trust me to tell you when I need help. Please do respect my decisions.

[onlytwitterpics]

[epileptard]

well

i made another one

i really had no will to make another one until i read this post by waitfiveminutes

the utter pain hidden under vicious sarcasm is all too familiar to me, and the presentation of the concept as a brief script appealed to my sense of humor

so here it is, with permission

[chronicallyrecovering]

this is a legit thing!!!

there are many reasons a person may not be able to drink or drive a vehicle, and shaming them is super not cool.

[ateenwitch-blog]

I think people need to know about this. Things like this happen every single day in America.

[castielsteenwolf]

no like get this in your heads, people DIE because they simply cant AFFORD to live, there are people DYING because they cant PAY for treatment. EVERY.SINGLE.DAY. WE LET PEOPLE DIE BECAUSE THEY CANT AFFORD CARE. 

[amaralikecamera]

we need universal healthcare and to cut health insurance out of this middle management profit siphoning role

[chronicallyrecovering]

this is why people say capitalism is murder. end classism. end ableism. treat our sick and disabled.

[crohnieinme]

Starting a new medication and waiting for it to take affect:

[crohnsgirlinpain]

Lol

[goodfuuuuuuuckinriddance]

“you’re not entitled to special treatment just because you have a mental illness”

yes? i am??

what do you think accommodations for disabled people are for?

a mental illness is a disability. if i need to be treated differently, if i need certain things done for me that i can’t do myself, if i need outside help to function in my daily life, then i’m gonna need “special treatment”. and that’s perfectly valid.

denying mentally ill people our right to accommodations is ableism

[indomitableme]

[disabilityhealth]

Shoutout to spoonies going through college

You are doing so great! I had some major illnesses during my time at college but nothing chronic, and I really can’t fathom how difficult it would be to manage studies on top of the pain and everything else that goes with being ill all the time. Seriously, you’re all badasses!

[support-groups]

[chronicallyrecovering]

i’m back with new meds and new mysteries!

hi spoonies!

sorry i took a little break, i’ve had a rough few weeks or so. i don’t have an official update on what the problem with my joints/my whole body is, but i should be starting physical therapy soon. i’m anxious in a lot of ways. i also started new migraine meds because they were getting really bad and weren’t going away so hopefully that makes things start to get somewhat better.

also, i could use a little help/feedback on an update: one of the conditions a doctor of mine mentioned me possibly having is amplified musculoskeletal pain syndrome. do any of you have it or know anything about it? or know any spoonies who know anything?

[thekitchenvirgin-deactivated-de]

Charming Silver Spoon Hair Pin or Comb

(Photo is also a link; custom orders always welcome)

[theecrohniegrace]

Need even though I lack hair

[chronicallyrecovering]

disabled person: i am beautiful! :)

able bodied person: ummmm please dont romanticize disabilities??? smh....

[active-minds]

Take a second, breathe, and make sure you have done these things! If not, do what you can now, and try again tomorrow :)

[chronicallyrecovering]

i waited until i ran out of meds and missed a dose to ask someone to take me to the pharmacy.

i was too nervous to ask for help for drugs everyone knows i need to stay alive. i was too nervous to leave the house. i was too nervous that i was going to talk to the pharmacist and say something or do something wrong/shameful/embarrassing. i was too nervous to speak up. i was too nervous to take care of myself.

whatever this is out of fucking control

[thefibrodiaries]

me at every doctors appointment