bittersnurr:

chronicillnessproblems:

miasmicsiren:

snouted:

chronicillnessproblems:

[[Image description: over a grey background, the post reads in large black text: “MY DOCTOR RECENTLY ASKED ME HOW MANY “USABLE HOURS” I HAVE IN A DAY.” Below that, in smaller text,

“She told me that a healthy person has, on average, around 10 “usable hours” a day. These hours can be spent going to work, getting errands done, and fulfilling other responsibilities. We realized that, on a good day, I have around 4 “usable hours” with lots of rest in between.

—

This really hit home for me because, despite knowing better, I still try to keep up with healthy people. I try to squeeze their 10 hours of socially-acceptable responsibilities into my 4 hours each day. The equivalent would be if a healthy person tried to fit 25 hours of responsibilities into their 10 usable hours a day. It also made me understand why I felt like time was slipping me by so quickly; because a healthy person has approximately 6 more usable hours a day than me, 42 more a week, and 186 more a month.”

Below this in the lefthand corner is a black box captioned with @strongerthanpots.]]

I saw this on Facebook and I LOVE it. I think I’m going to start using this, because telling my doctors how many hours I manage to be awake (6-8 hours usually but sometimes less) is not really getting across to them how incredibly fatigued I really am.

They hear I can live alone and manage school part-time (even if it is all online,) so they assume I’m doing okay. It doesn’t matter that sure, I SURVIVE living alone, but some days it’s borderline dangerous, like when I can’t eat or get to my meds, aside from the fact that living alone and being this fatigued means that I never eat meals that take more that 5 minutes to make, my floors haven’t been vacuumed in a month, and my clothes do get cleaned, but then live in the dryer or the laundry basket until I wear them and throw them back in the washer, and they never make it to the drawers because that’s too much energy on a task that’s technically not necessary.

But my usable hours per day are like, maybe 5 on a really good day, and school takes ALL OF THEM. Some days I only manage to feed myself and my pets, which is about 2 usable hours. No wonder I’m always behind.

At my worst I can maybe stand or walk or do a light task for 20 min at a time every few hours. I can handle may be 2-4 hrs total of socializing (including cumulative at work) a day if I rest up for it. Essentially nothing after work except maybe acupuncture or therapy once a week, and I need at least one weekend day off (usually Sunday). I have my groceries delivered and I don’t walk more than a few blocks at a time (UberPool is my friend).

Your doctor is basing their info on extroverts, and failed to account for introverts, who, while using less time, are still healthy, excluding any other influences. Speaking of which, your doctor also ignored other outside factors.

10 hours a day my ass.

What the fuck, pray tell, do you think introversion has to do with evaluating the effects of disability on day to day life?

Do I need a disclaimer on all my posts or something? This is a CHRONIC ILLNESS BLOG, people, the vast majority of posts are CHRONIC ILLNESS AND DISABILITY RELATED! Take your abled nonsense elsewhere or, preferably, nowhere at all.

Don’t you know being an introvert makes you essentially disabled and unable to get out of bed? Introverts clearly do nothing when they are home but stare at the wall, no one uses energy on things like preparing food or showering or playing videogames or gardening or anything you can do in the house with other people.

Like fuck there is no wonder the doctors don’t get it when people cannot grasp that YES THINGS DONE AT HOME COUNT AGAINST THE ENERGY YOU HAVE. Yeah sure disabled people all just spend all day playing video games or reading books why would you need accessiblity you can just get an internet job those don’t require effort right?