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#chronic illness tag
sunrisethoughts02 · 6 months
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I think something we should talk about more in the chronic illness, mental health, and disability communities is the feelings of fear wrapped around high spoons days. It really is okay to feel nervous when you’re feeling good (even for just an hour). It doesn’t mean you’re broken or wrongs m. It’s okay to take your time learning what routines serve you best at different energy and pain levels. it’s okay to learn not to push yourself too far. It’s okay to acknowledge feelings of anxiety or fear or bittersweetness over really good moments. It’s okay 💜
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wormonastringtheory · 2 months
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casting a head less hurty spell for february
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trans-axolotl · 11 days
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oh my god. just got amazing fucking news. a bunch of things aligned perfectly and i will be GETTING A CUSTOM RIGID LIGHTWEIGHT WHEELCHAIR! I"M GETTING A QUICKIE QRI!!!! literally so fucking happy like i don't even have the words this is going to enable me to get back so so much and just so many more things and hopefully slow down the progression of some of my symptoms and just. i'm already spending so much time stuck in bed with worsening symptoms and falling and seizures and everything it's just. i'm literally so so so so so fucking happy and SO so grateful for the people making this possible.
anyway. have a few questions for any mutuals who are wheelchair users about measurements. most of the measurements have been taken, but there were some stuff they were leaving up to me so i wanted to get some feedback/ they were bad at explaining and i want to just double check that all the measurements were taken down right.
can anyone explain/provide resources on the difference between the front seat height measurement and the rear seat height measurement? right now rear seat measurement is 15" and front seat measurement is 17"--is the two inch difference reasonable/what is the reason for the difference? how does the height of my seat cushion play into what the final measurements for seat height should be?
what are the pros and cons of different frame angles? the person said anything from 75 degrees to 85 degrees would be good options but didn't explain the differences between the frame angles.
pros and cons of different size caster wheels? the person recommended 5" wheels but didn't explain why.
pros and cons of different center of gravity? the person measuring recommend 1.5" but didn't explain why.
for context about my mobility and what i'm looking for: i have pretty good upper body and core strength, no significant posture issues. pretty bad POTS, significant post exertional malaise, other issues with leg weakness, tremors, balance, seizures, neurological issues that currently make me a pretty significant fall risk. but i am still ambulatory, although it's pretty limited. will need to use chair outside the house and on public transit--navigating a lot of different types of sidewalks, lots of different hills, plenty of curbs with no curb cuts. so main things i'm looking for are a chair that's easy to navigate, turn, something I can learn to do wheelies in bc i will need that skill to navigate the city. etc.
if anyone has any advice or any resources for wheelchair measurement would be VERY appreciated bc i just want to double check everything and make sure it makes sense before the chair is ordered.
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discociated · 9 months
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back in the er because my port has decided to continue trying to eject itself from my body 😌 it's literally showing thru the blister now so that's just Great.
had to spend $20 ubering here and then another $30 ordering a charger plug because i accidentally left mine and that was the amount needed for the order minimum + a tip. so now ive got about $70 left which isnt even enough for my $98 storage PLUS i still need groceries.
happy disability pride month to meeeeee
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sparkles-and-trash · 2 years
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Listen, I know it’s just a meme, a joke, but the whole «you’re literally *age*, go get a job» type of replies that are all over Twitter makes me want to shrivel up and die.
I already feel like a waste of space because I can’t contrubute to society in a «normal» way.
Seeing those tweets makes me feel like I’m not worthy of having opinions or exist in fandom spaces because I’m too sick for a conventional job.
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too-relatable-ouch · 2 years
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anxiety? bitch i can’t walk 😀
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juno-infernal · 2 months
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medically necessary knee-high compression socks under aesthetically necessary knee-high leather boots.
illness: chronic
look: iconic
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emilylprentiss · 8 days
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what really sucks about being chronically sick and having weird things happen to your body all the time and it essentially be "normal" for you, is never really knowing when to seek out medical help jfkdfjs
i have pots and ehlers danlos syndrome so im in pain a good amount of time and i have other things wrong with me that cause pain as well, so i never really try to figure out what is causing what pain
but today my right lung and/or rib cage is throbbing and really hurting at random moments and im kinda just like oh i probably popped another rib out again which is normal for eds but then the other part of my brain is like TUMOR ITS A GROWING TUMOR WITH TEETH AND ITS GOING TO EAT YOUR ENTIRE LUNG AND YOURE GOING TO DROWN IN YOUR TUMORS MOUTH
and then im like well as cool as that sounds maybe i should go to the er, and then ultimately im like you know what its not that bad i can still breathe... better just stay at home and complain on the internet about it
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melancholic-pigeon · 3 months
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Man, it's a weird feeling being a long-time fat activist and getting significantly fatter as a result of health things.
Since I got sick, I've been struggling with malnutrition and being chronically underweight. When my health gets worse, I lose weight, and when it improves I gain it back. The past ten or so years have been spent fighting for every pound to stay on as long as possible and losing it over and over.
I'm not what fat acceptance activists would call fat, but my BMI thinks I'm significantly overweight. I hope I do get fat, because it will mean I've made profound strides in my recovery. I'm the heaviest and fattest I have ever been in my life and it's not a coincidence that I feel less sick than I have since before I got sick.
But I just keep like, clenching up and bracing for all of my bazillion doctors to be appalled and horrified and start telling me it's imperative I lose it all again. I'm angry that I can't automatically trust my fucking doctors to treat this as the monumental accomplishment that it is. I'm pissed off that I might already be considered plus size by fashion industry standards and thrilled at the idea of shopping in the plus size section because it means I'm not weak and skeletal and wasting away. I'm beyond proud of myself and I'm terrified of what's going to come next.
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yournewfriendshouse · 14 days
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love being an adult with chronic illness because if you have too big a day your own body sends you to your room without dinner as a punishment
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putting myself in bed but thinking still (good things!!)
I'd wanted to do some big retrospective thing for myself for the surgery anniversary but the truth it all boils down to is I'm just happy. 2023 had its moments, obviously, but it was the best year I've had in a while because I feel like I'm actually alive again. I can remember a decent chronology for the last year because 80% of my brainpower wasn't dedicated to the fact that I was in pain, whereas 2021-2022 especially I have very little real memory of. (reading some of the posts I made during that time has me like "haha true! ...I said that?") it's been a full year now since I last had chronic illness-specific pain and that's wild to me!! I can DO things again!!
when I was cleaning my files and getting old art transferred to the external hard drive the sheer canyon between 2022 and 2023 was just - I had completed ~33 pieces in 2022. "pieces" sounds generous; most of them were small doodles and disproportionately effortful for it. and then: WELL over a hundred in 2023. nature is healing! (I am healing!)
just. I'm so happy!! I love being alive!!
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czarrish · 25 days
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iiiiii don't want to get another infusion i want to just be normal and healthy without having to spend six hours at the cancer center every six weeks i want to not feel like the room is spinning when i'm lying down i want!!!! i want
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wormonastringtheory · 7 months
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the joint machines sir. they're broken. no. i can't just grease them
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trans-axolotl · 1 month
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Still no seizures so they said we’re going to do sleep deprivation tonight and hope that triggers one. So I’ll be up until 4 am tonight and if That doesn’t work then they said tomorrow they’ll bring out a pedal bike and then try to get me to hyperventilate on purpose. Charlie called this the seizure factory and it’s cracking me up. trying to make seizures happen at the seizure factory. main thing that’s making me crazy rn is not being able to leave the bed and the sensory feel of the EEG and not being able to shower. but had several visitors today and they brought some gifts and that was really nice. Hanging in there 💖
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discociated · 9 months
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friends! hi! good morning! figured it was time for a little update 💜
got my port taken out yesterday! waiting on culture results to rule out infection. if there's no infection, i will be getting a picc line sooner rather than later. if there IS an infection, i will be moved to a different inpatient floor (rn im technically in "outpatient observation" but still staying overnight - last night was my 3rd!)
i am also dealing with some symptoms that point to a csf leak. have been for a few weeks now but it is WAY worse now. im pretty much just sitting in the dark in my hospital room with my phone dimmed 24/7 rn bc of the migraine. awaiting testing for that!
i ended up having to use most of the of the money i had for stuff to keep here at the hospital, as my room at home is really dirty (in like, an unsanitary way, because i struggle to manage my environment) and i really needed some clothes and another blanket etc
so yea! storage unit #1 is due on the 10th (today is 7.6.2023) and im still gonna need food when i leave here so if y'all could shoot some $ my way i would appreciate it!
pp, vnmo, and $ app are all "asteronauts". thank you so much & i hope y'all are having a better disability pride month than i am lol 😭
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i am trying to write a fic for a friend. i keep bleeding on the said fic
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