#complex illness

[painedandconfusedsblog]

There is a particular kind of invisibility that happens when you are profoundly sick and your world gets smaller than most people can imagine. When there are things you genuinely cannot do for yourself, yet you also don’t have the capacity to explain your situation, coordinate support, respond to messages, maintain friendships, or make your suffering legible enough for other people to understand.

[xxredridinghoodxx]

Also remember there are disabled trans people and LGBTQIA+ people who are vulnerable — and there are some who have long covid. Intersectionality is a praxis, solidarity and analysis tool. We are in every community and various age groups, never forget that. Put the protest and rioting back into Pride. And keep it there.

[chronicallycouchbound]

Maybe Salmonella Is A Sign To Rest

So much of being chronically ill is work— doctors appointments, phone calls, government aid programs, navigating treatments, scheduling, billing, referrals, the list goes on. When I get a temporary illness, I take it as a sign to rest and reset my body.

I’m laying in bed, making additions to my chaos scrapbook and letting my feelings sit with me as they are, no matter how uncomfortable.

I’m listening to my body, feeling the warm flush of the fever come in waves. There’s a comfort in the routine— water, electrolytes, ensure, blankets on, blankets off, hot, cold. It’s familiar. I know what to do.

I’m focusing on one task at a time. I cut out a snippet and tape it into my book. I sip the cool water. I take deep breaths. I check my heart rate. I sing along to my music. My stomach churns. I breathe more.

I feel so tired, not just physically, but deep inside me. Like I’ve been running for months. And in many ways, I have. Seeking safety. Fighting for adequate medical treatment. Managing my health. Healing emotionally.

It’s so easy to feel overwhelmed.

And I think sometimes, that serves a purpose, the same way the fever does. It allows me to reconsider my priorities, where my energy goes.

So today, my energy is going towards feeling what I need to, and adding to my scrapbook.

And I’m resting.

[Originally written a year ago today]

[painedandconfusedsblog]

Adjusting to a new quality of life isn’t a mindset shift it’s a slow, disorienting loss of reference points

[xxredridinghoodxx]

Deadline is Dec. 19th 2023

Please reblog to spread

Ways to act:

Tell the Census: Nothing About Us Without Us

The Census Bureau proposed changes to the disability questions in the American Community Survey that will have a negative impact on the data

More information:

[of-another-broken-heart]

I'm genuinely trying to do my best to follow my discharge instructions and (counts again) THREE new diagnoses for permanent incurable conditions—while ALSO healing from surgery.

The outright contradictions suck so bad.

Diabetes: Here's 3+ unpaid full-time jobs (and your old eating disorder!) to hyper micro manage and moralize and agonize over food, meds, appointments, labs, tests, self-tests, supplies for all the above, and how to afford it with $0. Never stop moving. Never stop drinking water. Always be pissing.

Surgery recovery: You will be fatigued. You will need to rest, nap, sleep. You will be in pain. So much pain that you have not 1, not 2, not 3, not even 4—but 5 total medications for pain management. You have permission to walk if you're able. But rest. Rest. Rest.

Gallbladder-be-gone: Drop all fatty foods. Eat slowly and deliberately so if anything causes upset, you can pause before there's more contents in the stomach to complicate things further. (I did this already; the fatty foods in question are indulgent expensive things, and I am a slow eater anyway)

Diverticulosis / Diverticulitis: actually just straight-up not included in ANY of my discharge paperwork or talks haha lmao. My dad had part of his intestines amputated due to infection/complication from this condition. I know to avoid lots of seeds. That's about it, though.

Despite getting better sleep last night than the previous 2-3 nights, I'm the most exhausted I've been in over a week. It takes me 20 minutes to physically get into bed, and I cannot get up and out on my own. So I can't even rest or nap like I was told to, and want to. It sucks! It sucks a lot!!

OH. And, I still very much have MECFS, and hypothyroidism, and asthma, and I'm still AuDHD. So it's just. Fucking overwhelming. By a lot. Over here.

[fangirlingspoonie]

"I'm TRYING to die in peace! Can you PLEASE stop tugging on my catheter. Jesus Christ, you people!"

-Quote from my dream last night.

I woke up laughing...and needing to pee.

[luciferspartner]

I love meeting people who are like my medical twins. like yeah we’re all genetic weirdos I love that how was your surgery did you hear about that new research check out this new freaky thing I can do with my body omg I heard u got gaslighted again let me make sure nobody we know sees that person also my new specialist fixed my other thing you would like them they called me a freak of nature and sighed when I told them about it and my other doctor called me at 7am yesterday to tell me about a new medication and I cried anyway how are your kids