#working with chronic illness

[unfilteredrealities]

My health is plummeting downward at the moment.

My POTS is going brrr. I have 151bpm when standing and doing light walking.

My hand and leg joints are tingling and hurting and causing me numbness.

My psoriasis is itchy as hell.

My head feels like it’s going to explode.

I feel 24/7 as if something bad will happen to me.

Edit: I literally fell asleep while typing this and now my whole body is itching 😭🫠

[dailydivergent]

There’s no such thing as work-life balance for neurodivergent & chronically ill people.

This is because everything in my life requires work:

maintaining friendships

keeping up with my hygiene

managing bills

making money

remembering my basic needs

sleeping regularly

outputting creatively

All requires some aspect of work for me.

And when everything in your life requires work, your balance goes out the window.

If you're neurodivergent and overwhelmed — I see you.

If you're chronically ill and overwhelmed — I see you.

You're not dysfunctional.

You're not incapable.

You're doing your best.

[thepeacefulgarden]

[opalsiren]

'being disabled is a full-time job' actually with most full-time jobs you get evenings and weekends off, plus holiday time and potentially other benefits like healthcare and dental. we don't get to clock off from being disabled nor do we reap any benefits, material, social, or otherwise. hope this helps

[thetimetravelinglady]

Been in the library all day, working through some reading and taking lots of notes, which feels like a little and a lot all at the same time. It's amazing how much a migraine and/or fibro flare completely uproot my whole workflow. I'm glad I could focus enough today on something productive, but bummed that I had too much vertigo to be on my feet very much.

[a-sassy-bench]

do able-bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?

like honestly. what do you think being disabled means?

[chronicallydragons]

Thought it would take me months to knit this, but I underestimated the power of hyperfixation when you’re virtually housebound and work like 2 hours a day, so I made it in 15 days instead. Once it’s done blocking, I’ll have a sweater I made!! In the middle of a never ending heat wave! Yay!

#StegoSweater by Hunt Hand Knits

[araekniarchive]

@mnvart // Kaveh Akbar, 'Calling A Wolf A Wolf' // @PinkRangerLB on Twitter // @kosmogrl // @devinsturk, '15 Proverbs for the Fellow Chronically Ill' // Jasmine Deporta // Anaïs Nin, House of Incest // the gentle wisdom uquiz by @inkskinned // Rora Blue, 'Sweet Dreams' // Hala Alyan, Dear Layal

[perdamian]

hey guys… we all know that it’s okay for mithrun to have a caretaker for the rest of his life, right? that even after he heals and potentially regains his desires he will probably still need support?? that the goal of healing is not to become a “normal person”, but to build skills to navigate the world in a way that accommodates your disability??? that relying on the people around you is not a failure, but proof of your desire to live????

[spicy-apple-pie]

Imagine Damian not acknowledging that he suffers from Metal Spine-itis and the pain that it causes him. Mostly because he would have to stop Robining for awhile and he only really gets to hang out with his dad when he’s patrolling with him.

But one day he wakes up in excruciating pain and literally cannot move, he can’t even cry for help. Luckily Bruce realizes that Damian has slept in and it’s very unlike him. Alfred says that it’s good for him, he’s a growing boy that needs his sleep. But Bruce’s dad senses are tingling so he goes up to check on him.

He rushes Damian to the ER and they’re put into a room very quickly and Damian is given some very strong drugs for the pain while they wait for tests. And while he’s hopped up on painkillers he starts crying.

“Does it still hurt, kiddo? Where is it?” Bruce asks, wiping tears from his cheeks. Damian tries to shake his head, but winces and just whispers out

“No.” Damian gasps, “I just- I just don’t want to lose Robin.”

“Don’t worry about that, sweetheart.” Bruce runs his hands through Damian’s hair. “Your health comes first, okay?”

“No!” Damian grunts, “I only get to see you when I’m Robin. I don’t want to lose Robin.”

And Bruce kinda is in shock for a bit before his brain is like “one problem at a time.” And he focuses on getting Damian feeling better.

So then he organizes at least one day a week where him and Damian hang out. And then he starts doing it with all of his kids.

And some days, Damian comes to him saying that his back hurts and he needs some comfort. Sometimes Bruce isn’t sure if his back really does hurt, but it doesn’t matter. He still gives any affection Damian allows.

[unfilteredrealities]

Autumn started and rainy weather came upon us.

Today it rained the whole day and I was wondering why the fuck my joints hurt and my I’m in pain and so eepy and wanting to go to cozy bed. Then realised that I have psoriatic arthritis and no wonder I’m in pain lol 😂

Well I survived today somehow but brain fog hit me around 3 pm at work and I probably explained a client something wrong about some repair approval process for her car whoopsie daisy 🫡

[lokilysolbitch]

i've said it already probably but ppl who don't use mobility aids. especially doctors. stop trying to get rid of other ppls mobility aid. stop making that a priority. stop it with the "we gotta get you off that [mobility aid]" "you shouldn't need to be using a [mobility aid]" "let's focus on getting you to where you don't need [mobility aid]" "a [mobility aid]? but have you tried [herb]/[medicine]/ [exercise]/[facebook hack]/[pseudoscience]/[meditation] instead?" "but you look old/cringe/weak/sick". shut up

i don't know why so many of y'all think my end goal is to stop using the thing that helps me. and i KNOW most of y'all wear glasses or contacts but you're not running around trying to find the solution to make you stop needing them. so quit doing it with every other aid just because it reminds you of old or sick people.

especially bc most of y'all don't want to have that reaction when it comes to chronic pain, fatigue or discomfort. i say "my joints hurt" you say "oh well :/". i say "i feel lightheaded all the time" you say "just push through it". i say "my stomach is at least a 7/10 on the pain scale every day" you say "are you sure it's actually that bad? maybe you're exaggerating".

but as soon as i pull out a cane, or a shower chair, or a spinny chair for when im cooking in the kitchen, and i say "finally, im getting really good help!" . that's when you care. and all you want to do is take that away as soon as possible.

you just don't want to fucking see disabled ppl be disabled.

you don't want to have to look at it. you don't want to have to listen to it. you don't want to have to be reminded of it.

but too fucking bad !! i don't care !! im naming and decorating my canes !! they will be the loudest part of my outfits !! the same will go for a rollator if i'll still need one in the future !! i'm going to talk about how i'm disabled regardless of if anyone else can hear me !! because i am !! why should i hide just because YOU don't like it !! close your eyes !!!!!!

[currentlyfreebleeding]

me as a disabled person constantly trying to maintain my sense of self love while also battling a constant sense of frustration and anger over how my body works

[thepeacefulgarden]

[jade-len]

Tired, 39 year old Shen Yuan is constantly nagged by his parents about giving them grandchildren. At a certain point, they were done with begging for him to marry a nice lady and just skipped to pleading for grandkids.

While the idea of having a child does make his heart yearn in a way that will definitely be dangerous if thought about for too long, he just doesn't have the time! No way! And what kind of father would he be, secretly reading cheesy, terrible webnovels in his free time? Which, mind you, is rare nowadays. He'd like to spend that valuable time getting rest via napping, thank you very much.

So what if Shen Yuan's heart swells when he sees his students run up to their parents with adorable, toothy grins? So what if he treats his class like they're his own children from time to time, spoiling them silly and proudly wearing the badge of "Best Teacher!" every year? So what if he wants a child to call his own!?

To love and care for a child, Shen Yuan has accepted that it would simply be a privilege he'll never experience.

...Think, think! Don't get so mopey now, Shen Yuan! Try to outweigh the baby fever with the pessimism you (slightly) obtained from your mean older brother!

How about this: There'll be no time for himself, none at all! Just more and more work. Come home from his job, dealing with a bunch of rowdy kids to find your own permanent little monster running around the house! At least he's getting paid for the first one!?

Shen Yuan had seen those videos and posts of kids accidentally exposing their parents embarrassing tendencies. Knowing him, his hypothetical child would have piles upon piles of blackmail on the Shen family's youngest son! Leave this old man alone, alright? Non-existent dumpling, theoretical baobei, please don't be so careless with your father's reputation...

(It would be careless too, to become a gaping hole in the heart of his child. Wouldn't it be selfish to have one, only to die a few years later?)

Over a decade ago, believe it or not, this esteemed Mr. Shen had gone by the shameless persona of "Peerless Cucumber" on the internet. He'd been an infamous anti-fan of the male power fantasy stallion web-novel series, Proud Immortal Demon Way and would leave scalding essay-length comments and posts ranting about its terrible plot point and flaming the author for his awful characterization and overall writing. That era of his life was when he actually had the time to stare into the digital sea of texts and write entire documentaries as replies for twelve hours straight. Fortunately or unfortunately, Shen Yuan doesn't have the same luxury as of now.

Despite the constant hate spewing from his younger self, present-day Shen Yuan is honestly very impressed by the constant thousand word updates every day. Honestly, looking back, how did that man accomplish that? Airplane Shooting Towards The Sky, dear author, are your hands okay? Youthful Shen Yuan's hands cramped all too much from simply typing up angry comments, now imagine PIDW's author??

Aaah, yes, the former hater Peerless Cucumber had long forgotten about PIDW. The author mysteriously disappeared one day, leaving Luo Binghe out on his own for more wives to dual cultivate with as Shen Yuan had realized his passion for literature (and critique!).

With a newfound, realized passion in his heart, Shen Yuan went off to actually pursue the college education his parents had very lovingly saved (and were ecstatic he was actually using) and became a literature teacher! NEET 21 year old Shen Yuan would be quite astonished to see this dignified Mr. Shen now, yes, very much so indeed.

Now, Shen Yuan.. doesn't quite remember PIDW all too well. He begrudgingly admits that it holds a dear and special place in his heart, but in all honesty, Shen Yuan can remember merely a handful of the wives and plot points. Ah, this is what happens when you actually get a life, interesting! Clap it up!

The most Shen Yuan remembers is the stallion novel character, Luo Binghe. His favorite, and - he really can’t stress this enough - an absolutely wasted potential of a character. Shen Yuan may be an older and wiser man who doesn't waste constant time on the internet like before, but that only means he actually has a degree to be critic. Serves all of those self-righteous, questioning commenters right from all those years ago! Look at him now!

Importantly however, Shen Yuan also remembers just how badly he wanted to coddle the protagonist, blackening or not, pre-abyss, post-abyss, even as a demonic tyrannic emperor! Can you believe that none of Luo Binghe's wives wanted to squeeze his cheeks and kiss his forehead!? Master Airplane, throw in some fluff, will you? Spare the poor boy from all of these succubi (metaphorically and literally) and let him take a nap! Ahhh, who really cares if Luo Binghe has a kingdom he needs to take over? Throw a blanket on him! Cranky, old Mr. Shen knows the feeling of being terribly overworked, so imagine how the protagonist feels!? Shen Yuan nods his head approvingly at the thought.

All of those mistresses flocking over to Luo Binghe... If Shen Yuan were his guardian, he would kick them all out without a second thought in place of good family bonding time.

Women, power, sex... really, what's needed is a loving father who'll coddle and take care of Binghe when no one else can!

So, Shen Yuan guesses he shouldn't be surprised when he wakes up in the body of Tianlang-jun.

[the-bar-sinister]

Self-reminders today:

Resting is an important part of creating and doing.

There is more to resting than just sleeping.

Resting means letting yourself be idle of body and idle of mind.

Resting replenishes mental and physical strengths.

There is nothing virtuous about resisting rest.

There is nothing virtuous about working without rest.

Idleness and rest are not wrong or lazy.

Allowing yourself to rest enhances your creativity and allows you to do better work.

There is nothing about resting that should make you feel guilty.

You need rest.