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pumpkin 🎃 👻🦇

@pumpkinstars.bsky.social

580 followers 250 following 42K posts

hi im pumpkin. she/her. 🧠🌶️. Asexual. Anti-racist. I like gardens and colors. ME/CFS, hEDS, MCAS, POTS, Fibro. nearly bedridden. i love people and also people scare me. 🇺🇸

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pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · Jan 17

hi i’m pumpkin

i’m disabled and home bound, mostly bed bound. i write about my life and my experiences with #MECFS #MCAS #EDS #Fibro #POTS

oh! i also sometimes post nail art ☺️ my hobby

i used to do volunteer work in my community but i got too sick

now, i manage my illnesses and work from home

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pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 1m

💛💛💛

pain sucks. and learning how to live with it is such a journey.

it was a lot for me to realize and break down too. i had to learn to see it as loss of function.

i’m glad you found a great pain clinic and doctors 💛💛 and that nurse who helped 💛

it makes a huge difference to have the right team

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 18m

hehe yay friends!!

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 19m

it feels like i just finished a major battle and i’m exhausted

and the impact will be a while

but it was only a day

jeez i’m not doing well anymore autumn slide. in spring or summer i lasted weeks without fluids and managed ok enough.

this was hard. just a day.

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 20m

i got my fluids and
i did my halloween nails while waiting for for the fluids coming

it hurt s lot i was in bad pain and it suck

but it’s a lot better now. bolusing what i need until i am better fully.

going that long without fluids even just that full day can have lasting damage on me
it sucks

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pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 37m

got my fluids
yes

yay

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 6h

if people leave, where are you all going?

it took me a long time to come here and learn. new things are hard. learning a new th ing would be hard too

and. i doubt i could use anything that isn’t like twitter or here. i hope there’s an option.

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pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 6h

i did the supplement stacking
yay

so now it’s done for another two weeks

And i can take them every day again

i haven’t wanted to take them. but also, i haven’t been up to refilling them or able to, so i started hesitating more to take my doses. which isn’t good.

my supplements help me so much

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pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 6h

i am going to buy a salt gun to get the bugs

i have tons of salt
i have POTS

so a salt gun as my weapon of choice makes tons of sense

i’m so over these

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pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 6h

in between crying i find myself whining about things to myself.

“i don’t want it!!”
i said about supplements, and i begrudgingly but steadily take out my things to do it

haha it’s getting done i’m just so not in a good mood at all

today sucks pain wise

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 6h

me to me just now: ugh time to take meds -again-?! why do i have to take so many.

me to me: uh, because you’re really really sick dude.

#NEISvoid

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 7h

been putting this off but im gonna refill supplements today bc i ran out and been not taking them before that so
yeah

don’t want to get any worse

also been walking a bit when i can. continuing to do that. getting up sucks. walking is ok ish.

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 7h

i hurt a lot.

i’ve been drinking so much salty water and LMNT today trying to counter act no IV fluids
and trying not to freak out a out it when i am also crying off and on because of pain and distress.

these expensive things don’t even fix the POTS

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 7h

i saved up to buy more LMNT at once

it’s $45 for a box of 30

and buy 3 get 1 free on their website

it’s expensive to be poor
i couldn’t save money back then

now i’m set for a while. for when i need an easy hydration ready to go and am tired of salt.

and i got a new flavor to try! lemon 🍋

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pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 7h

i forgot the pain gets worse when i the low blood volume

and i forget more
hehe so that’s probably why

and it hurts

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 7h

my IV bags

there are 3 in a box somewhere
or 2

idk where the box is
i tried look when i got the caps
but i am weak i couldn’t find it return to bed quick

this hurts a lot

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 7h

there’s other things i can’t remember
bestie would tell me and he’s not here right now

i need to find my nail stuff and distract

this is. bad i keep crying

oh the no fluids
that’s my main d problem
why i can’t think
my body so dehydrating it hurts
yeah

tonight
idk how many more

i wish i had my

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 7h

this is very painful
maybe crash from the stir ephadmachy

and the cloudy

and. i had to talk at work. but

and idk what else but it hurts a lot if aches

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 7h

ok yeah this is constant crying levels of bad

this is bad

it’s not hospital bad but it’s bad and this is bad and i dislike this

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pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 8h

my indian coworkers
i wish they could dream for more
dream for an equitable world for disabled people and fairness
i wish that was more possible
i wish they saw that things could be better

this is how i feel, instead of offended at the things said.

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 9h

eventually i get hospitalized. or go to the ER and get fluids only to get released when i’m fine right after infusion. and i crash from going, and get worse at home eventually.

it’s a lot

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 9h

And with the bad interoception jt means i can’t always tell it’s the problem and sometimes that panic hits on other things.

and everything is harder to do

so i get frustrated by everything

it’s active work to stay calm and takes work

and over time it upsets me more and more. if i must endure it.

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pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 9h

last night i dream of i was being chased

my HR goes up because of low blood volume. my heart has to work much harder to get little blood all the way around.

it hurts
it sucks

it’s scary. it’s easy to panic.

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pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 9h

that doesn’t matter to anyone in the medical system who can make a difference.

capitalism rules all here.

it’s sobering me up. the insurance issue from recent causing me to need to pay again in order to get any fluids.

this is why i work

i am grateful for the reminder during my work stress

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 9h

i don’t know how anyone is supposed to be disabled in this country. or anywhere.

i know i’m extremely fortunate lucky that i can get treatment at all.

but without my job handling the co pay until insurance fixes this thing, this would overcome me and i’d become homeless quickly. and likely die.

pumpkin 🎃 👻🦇 @pumpkinstars.bsky.social · 9h

i am watch anime
and keep drinking salty water. if helps but it can’t fix this. my body is too inefficient now.

i can’t believe i lived like this for years

i was a crying mess then. it took forever to get help and proper fluids.

they’re expensive now.