#chronic illness tag

[sunrisethoughts02]

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 💜

[wormonastringtheory]

casting a head less hurty spell for february

[rigormortisangel]

being chronically ill is great your life stops and all you can do is be sick, but everyone else is just living their lives and forgetting you exist until they trip over your unconcious body on the floor

[trans-axolotl]

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.

[imalesbirowan]

As someone with chronic pain, I love pain play so much. If you overload my brain with fun pain, it'll pull attention away from the bad pain.

[jennifersbod]

chronic illness really DOES feel like a race against time. i always struggle with thinking by the time i can afford to do the things i want, i might be too sick to do them or the treatments will be too late. and then on top of that you meet someone you love right before getting sicker and feel like you’re holding them back or that you’ve conned them somehow. and of course i’ve joked about it but those are some of the most emotionally painful parts of being sick constantly.

[moonsharky]

bros, i subluxed my jaw last night for the first time in a while (its one of the joints i sublux the least) and its still aching :(

[yournewfriendshouse]

guys

GUYS

I’m….

no I need to do this in a fancy font for moral support

guys I think I’ve been allergic to nuts this whole fucking time!!!

[un-monstre]

It’s called a tension headache because you need. A ttention.

[queerdiaz]

I was gonna make dinner but I'm in so much fucking pain and I passed out and I just fucking hate my body. I just want to do things and contribute dammit 😩😭

[wormonastringtheory]

the joint machines sir. they're broken. no. i can't just grease them

[rigormortisangel]

i was born sick but was expected to be like healthy kids and i wasnt so i was called dumb and slow and weak when i needed love and support

[trans-axolotl]

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 💖

[melancholic-pigeon]

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.

[moonsharky]

.

[yournewfriendshouse]

it’s hard to describe how healing in the brain can be utterly heartbreaking

so I’m on this medication that is usually prescribed to dementia patients to help me with brain fog and it’s good generally because I’m no longer living in the marina trench and trying to talk to people on the surface of the ocean but like…

you get these thoughts that complete from literal years ago. problems that your brain has been trying to crunch all this time but it just didn’t have the capacity to do so

I was just getting ready to go to spotlight and a title for the post grad thesis I will never write just dropped into my mind and now I’m crying