Chronic Illness Sucks Like I Just Wanna Do My Silly Little Hobbies

whoopsies

[ID: bee’s top songs/tracks of the past 6 months. 14/20 of which are beabadoobee’s album “this is how tomorrow moves,” which is the entire album. the remaining 6 songs are: 3 sabrina carpenter “short n’ sweet” songs, 2 SZA songs, “good days” and “saturn,” and 1 olivia rodrigo song “making the bed.” /end ID]

Shout out to people who use adult diapers

Shout out to people who have chronic UTI

Shout out to people who have catheters

Shout out to people who have urostomys

Shout out to people who still wet the bed

Shout out to people with kidney scarring

Shout out to people who deal with kidney stones

Shout out to people with kidney cancer

Shout out to people with kidney failure

Shout out to people who I didn’t mention but still have kidney/urinary tract issues

I love you, I know it sucks, the judgement sucks, the symptoms suck. You’re not gross, it’s okay to talk about it. Your suffering isn’t taboo, never let anyone treat you like it is.

i was trying to figure out why I find it so difficult to talk about my illness & disability with new people, or even people from my past, and I realized part of it is that I still feel like a phony? I didn't bring my cane last night and so it felt like I would get called a faker. or maybe that I was really a faker, see I'm out without my cane maybe I don't need it? and then the other part is that when it's a new person I feel like they're going to immediately run for the hills bc I am a huge red flag burden for so many reasons having these problems.

and then I thought about it some more & while some of that is kinda true, mostly I have to kill the ableist in my head. yes, sometimes it will be too much for people. but I have to let them make that choice. I have to just be who I am & let it happen even if it's heartbreaking to not meet new friends or connections. because not everyone will see it that way, and I literally cannot hide it so I have to just exist as I am and let the cards fall as they might.

People wouldn't do XYZ to a person with [disability aid] is such a bad take. I guarantee they do. They always do.

mate idfk but here we are this is now my side blog ig

me when i made this account upset that i couldnt get “zylahbee” as my account name only to discover IM THE ONE WHO HAS TAKEN IT 😭😭 i somehow have another tumblr i didnt know about i love memory problems 👍🏻👍🏻👍🏻👍🏻

I FEEL SO SILLYYYYY

its okay to mourn.

its okay to mourn the childhood you could’ve had.

its okay to mourn the career you could’ve had.

its okay to mourn the children you could’ve had.

its okay to mourn the education you could’ve had.

its okay to mourn the friendships and social life you could’ve had.

its okay to mourn the hobbies you could’ve had.

its okay to mourn the travel you could’ve had.

its okay to mourn the life you could’ve had.

nobody gets to tell you that you need to cheer up.

i miss the beach so much

let's recap what we've learned about the United States in the last few days.

things that are terrorism:

allegedly shooting a healthcare CEO whose company generated more pure profit (not revenue, profit) in a year than the GDP of 94 countries, exclusively by denying coverage to people who pay for it

a 42-year-old mother of 2 using the wrong combination of 7 words during a heated conversation with a call center employee at a health insurance company who was in the process of denying her health coverage.

things that are not terrorism:

mass shooting in a Black church to incite a race war

going to a BLM protest specifically to kill protestors

a neo-nazi running over a crowd of people, killing a woman

targeting and killing 23 latinos in an el paso, texas walmart

killing 12 people in a theatre, shooting 58 others, rigging your apartment with explosives

a QAnon groyper killing 7 and shooting ~50 at a 4th of July parade

killing 3 people and shooting several others at a Planned Parenthood in defense of the unborn

stalking someone relentlessly and then killing them and their child despite months of the victim making police reports

any one of the 1,200 murders committed by US police yearly, the vast majority being minorities

tightening your border while ~100 immigrants (including children) drown every year in the Rio Grande

United Healthcare killing an unnknowable number of elderly people by using faulty AI to deny medically necessary coverage

Aetna killing a woman by refusing to cover her cancer care

Blue Cross killing a 6-year-old by denying her appendicitis surgery

Cigna killing a 17-year-old child by denying her liver transplant

the pharmaceutical industry killing half a million people with opioids in the name of producing revenues in 2023 that rivaled the GDPs of countries like Spain, Mexico, and Australia.

the United States killing 45,000 people a year because they can't access health coverage

make sure you keep this guide handy the next time you find yourself interacting with your insurance company or any other millionaire, billionaire, or an individual who is part of a protected class such as a CEO or president of a corporation.

i have such a complicated relationship with the word “goals.”

i grew up constantly being asked what my goals or ambitions are for my life. i had answers when i was younger, id come up with different jobs all the time.

but as i got older - and sicker, i found it increasingly hard to feel encouraged by having goals.

it felt more like a weight that i wasnt able to carry, like i was carrying a massive burden on my back with everything going on in my life, and then i was expected to pretend like that burden wasnt there, and to jump up as high as everyone else who didnt have that burden.

as i continued to get sicker (to the point i had to leave school early) the questions of goals never stopped, and that was deeply confusing for me.

my goal was take care of myself, that was it. but that never seemed to be enough for people.

i would answer saying “im just trying to take care or myself and heal at the moment.” and they would ask me again, “but what are your life and career goals?”

why is taking care of myself not a good enough goal?

so now as i am in less of a crisis stage of life, im starting to open myself up to more “career and life goals.”

but thinking of goals is incredibly hard now.. i find myself feeling sick with anxiety thinking about even simple goals.. and i think im just really terrified of “failing” again and having to quit like i did with school.

i also feel like i have spent many years now trying to gain a healthy relationship with rest, with healing, with not being what society deems as “productive,” that i feel a bit uneasy about returning to more “productive” goals.

i dont want to lose what ive learnt over my time healing, i dont want to pressure myself too much to go back to being a “productive member of society.”

there are things i want to achieve in my life, of course there are. i dont lack motivation, in fact i have a really hard time having enough time and energy to do all the things im really eager to do.

its just that i have such a complicated relationship and past with the normal path that society wants people to take in life, im scared of losing myself, and failing in re-engaging in such things.

im reading emily wilde’s encyclopaedia of faeries right now and im not sure how i feel about it.

like i like it dont get me wrong. i eat anything up that has fairies of any kind.

but im a very.. emotional person, and so the format of the book being emily’s diary, and her being quite a.. professional and almost stoic? person, doesnt quite engage me as much.

maybe she taps into her emotions later in the story (i’m about a 1/3 of the way through) so idk!! thats just my thoughts so far