#working while chronically ill

[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.

#working while chronically ill #and at the same time #working with chronic illness

[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

#web weaving #webs #mine #theme: sickness #theme: sleep #theme: this is me trying #theme: i have no choice but to live with this #so. i havent made any webs in a while #ive been working full time and really struggling; turns out my thyroid has become unbalanced again #in addition to the cfs which has been actively ruining my life for eight years now #and this is how i feel about it. basically. #tw chronic illness #@mnvart #minava #kaveh akbar #twitter #@kosmogrl #@devinsturk #jasmine deporta #anais nin #@inkskinned #rora blue #hala alyan #chronic fatigue syndrome #myalgic encephalomyelitis

[uncanny-tranny]

I think it would really benefit people to internalize that mental illnesses are often chronic and not acute. Some of us will never be able to jump the hurdle of managing illness, much less sustaining a sense of normalcy. Many of us will never "recover," will never manage symptoms, will never even come close to appearing normal - and this is for any condition, even the ones labeled as "simple" disorders or "easy-to-manage" disorders.

It isn't a failure if you cannot manage your symptoms. It isn't a moral failure, and you aren't an awful person. You are human. There's only so much you can do before recognizing that you cannot lift the world. Give yourself the space to be ill because, functionally, you are.

#mental health #mental health advocacy #like... anxiety and depression are often concieved of as simple and easy to manage... #...but that isn't the case for so many of us. anxiety and depression just have a lot more research invested into them... #...and while i wish this were the case for literally every other condition it does alter people's perception of you to some extent... #...so while this is NOT solely about anxiety or depression it includes us... #...my anxiety and depression and PTSD have *destroyed* my life. this is chronic and will probably be life-long... #...and that isn't my fault. i've done the fucking work but guess what? that doesn't account for the fact that I Am Just ILL #the least we can do for each other is to be compassionate #be compassionate to those who cannot heal. be compassionate to the people who can't manage their lives. this world is scary enough #recognize that management of symptoms is something not all of us can do - even IF their condition is labeled as 'easy to manage' #i allowed myself to feel angry that i can't heal 'normally' and that was unfair as fuck toward myself #and i NEED people to internalize this so that MAYBE this could help somebody else who is where i was #i NEED them to understand that it's okay that they are where they are - sometimes shit just doesn't turn out how you expect or want #don't beat yourself over you being a person. you are struggling enough. you deserve to rest. just rest please #and just... give yourself space

[thedisablednaturalist]

Whenever I get the sleepies at work I just put my head down on my desk and take a 15 minute nap (timed on my phone to vibrate and wake me up) and it helps so much. I feel a lot more awake and alert and get more stuff done than if I had just tried to power through it. If you're able to, highly recommend just giving into the sleepies instead of going for coffee.

#wrenfea.exe #working while disabled #my boss did come by and I had to jolt awake but im a very light sleeper #next time Ill probably put up a lil sign by my head #i have my own cubicle so that helps and my boss is pretty relaxed #chronic pain #chronic disability #chronic fatigue #cfs #chronic fatigue syndrome #chronic illness #chronically ill #disabled #fibromyalgia #spoonie #disability

[survivingfmandcfs]

Every day I'm like, "Okay, it's time to do yoga!" And then lie down face first on my bedroom floor.

#yoga #fibromyalgia #me/cfs #pots #chronic fatigue #chronic illness #chronic pain #for reals tho nothing works as well for my lower back pain as just...lying on the floor on my belly for a while #doesn't work to do it on a bed or couch. must be the floor #living room floor is actually better than my bedroom bc it has more cush #but bedroom works in a pinch

[cy-cyborg]

I'm preparing some writing advice posts and while researching I came across an article (that's not the right word but I can't think of the correct one lol) released by the journal of the American society of plastic surgeons in 1989 and while it was a helpful source (at least, the snipped I saw that's not locked behind a paywall anyway), I just had to laugh at how the author decided to introduce and frame the topic (examples of amputees using prosthetics in the antiquity/renaissance periods). This was the opening paragraph:

"The ideal of physical perfection has always required completeness and symmetry; a missing body part renders a person unusual, vulnerable, and ugly. Consequently, since antiquity, amputees have sought to correct this unacceptable condition."

Like geeze, ok, what did amputees ever do to you, who hurt you 😂? It was written in the 80's so I'm not shocked or upset by any means, I found it funny honestly (and I do recognise the author, who seems to be a plastic surgeon, was likely just repeating the sentiments some of their patients said they were feeling) but this sounds like the author just really has something against amputees specifically lmao.

#in all seriousness this is why its important to talk about internalised ableism. this wasnt framed as an opinion but an objective fact #while its funny looking back on this kind of stuff the medical feild has massive problems with ableism. its gotten better and i dont think #would fly today there are still too many people whos job it is to work with disabled and chronically ill people who think like this #disability #disabilities #disabled #amputee #doctors #ableism

[milkweedman]

Hi, you said in your bio that you're chronically ill. I was wondering if you had any tips for knitting with chronic pain (assuming that's your flavour of chronic illness)? Or do you know anyone who could give me advice?knitting/sewing is my sanity-saver.

I use compression gloves, only knit with specific weights of yarn (the ones that are the least painful for me), and try to take frequent breaks, which for me looks like switching hobbies every 30 minutes or so (knitting to spinning to knitting, etc). I also do my best to be very gentle on my joints when i can, altho i honestly rarely have the choice at work.

Personally i have joint problems and migraines, so thats what im correcting for/trying not to make worse. Helpful advice probably varies depending on what youre trying to correct for. Really my only general advice is "when it starts to hurt, try to stop" and "if possible, save the painfully difficult stuff for when youre doing well, and make the easier stuff your usual work"

If anyone who sees this has got other tips please feel free to comment them

#i havent knit socks in a while and i realized my last wrist and thumb issue flare up was the last time i did socks #and also right now when im doing socks again #which is making me think maybe my wrists are better than i thought generally speaking but knitting just destroys them #socks specifically i tend to zone out with and ignore pain signals #idk what to do with that info tho. i guess knit fewer socks :( #anyway there may be some things like that which you can save for when youre feeling comparatively well #but chronic pain isnt actually my issue and i can and will work thru pain to the continual degradation of my joints #so rly the joints getting worse is what my problem is #so i dont know how much if any of this is helpful to you #sorry im replying right before i need to leave for work and thru a migraine so. might try and think of something more helpful and update #my answer #chronic illness

[corescreen]

Time for some joy in here since I know it can be easier to focus on the bad parts.

Maybe about a month ago I decided I was going to decorate my cane while I still could. And you know what?? I love it! It makes me so happy even though its a struggle to walk, to see it decorated and fun and me is amazing!

It’s all DIY of a like 12 dollar cane (though the tip cost half as much as the whole cane) and it works amazingly for my life.

#we need some disabled happiness on this blog that doesn’t have any worry associated with it #best cane ever man #I really try to have matching outfits and accessories so it took me a while to actually decorate it and then feel comfortable with it #and it worked out for the best #stars are now my signature thing #disability #mobility aid #cane user #cane #chronic illness #slay #disabled #core is happy #chronic pain #cripple punk #cpunk #accessibility

[okkennymay]

This time around I thought I would make a comic relaying the events after the last time I posted, because my gosh is it easier to explain with pretty pictures than upsetting words >vO I prefer to make jokes about my situation than anything, ‘cause honestly it’s a solid way of dealing with it and I take so many medications as it is, why not add laughter to it I say! ( •̀ ω •́ )✧

Despite my condition’s best efforts I still managed to organise and complete a commission with someone through emails! Thank you @waezi2 you were so patient as I arose from my grave every other day to get things done (❁´◡`❁) Fighting my body and winning to complete it was the victory I needed! The sheer satisfaction I get from a commission well received by someone is like pure nectar to me~ Sweet sustenance I just can’t get enough of! The money don’t hurt either, Disability Support Pensions do not go far in this economy 👀 This is as close as I can get to having a job and I wont let C.V.S (Cyclic vomiting Syndrome) or Chrohns take that from me! 

I’m raring to dive into more if anyone’s interested ♪(´▽｀) I’m just about to post a new “commissions sheet” to broadcast that very fact >vO I do love having something to draw between Ectober pages~

#OKKennyMay #chronically ill #chrohns disease #Comic #cyclic vomiting syndrome #If you're wondering about the fire #long story short my body has little to no control over it's temperature and sometimes it tries to overheat me to death during my episodes #it makes it such a hassle constantly changing out ice packs and devouring ice only to vomit it out trying to cool it myself down physically #In a room that's colder than ice but feels like a furnace to me #all the while in a desperate and delirious haze #needless to say it's a bit of a wild time but i've got a really awesome mum who keeps me alive during these moments #I'm determined to be more honest about what's going to in my life for my own sake #i'm tired of having nightmares about people knowing details about my illness so i'm just going to rip the damn bandaid off #no matter how embarrassing or horrifying it is to relay at times I gotta do it #because i'm tired of being ashamed for things I have no control over dang it! It's not my fault my body doesn't work right >:V #hey if you read all these tags thank you #I appreciate you

[trans-cuchulainn]

i'm sorry i'm not being fun enough on my personal blog which is the only place on the internet i get to just be a person and not have to be professional because it's the only place my colleagues and employers don't follow me but also i'm not sorry because sometimes being grumpy is part of being human and i'm so goddamn tired of having to perform perfection on the internet

#personal #like. yeah. on a good day i would have given a longer and more thoughtful response to the arthuriana ask #but also sometimes you hit a point where you're like. i've said this. i've written this post. it's in the tag already #i don't know what more people want from me that i haven't already given. i can't keep writing the same essays again #i'm not mad at the asker but i also can't do Free Academia On Demand at all times you know? #particularly when arthuriana isn't even my area of research specialism #i am pretty much always happy to answer ulster cycle asks because i always learn something from researching the answers #(or i already know the answers so they're very easy) #but stuff outside of that just feels like work after a while and sometimes i do not have the spoons #i am very glad of cicelythereaper's response. i recommend reading that one. #i'm sorry i couldn't be the one to give it on this occasion but lads. i am so fucking tired #i have so many jobs i have so many chronic illnesses i am so behind on everything in my life

[be-the-glenn-to-my-maggie]

For your modern avatar au What if spider has some sort of respiratory diseases, or other chronic inflammatory lung or obstructive lung diseases. Because he has to were a oxygen mask in the movie.

Alright here is my answer finally @peachycrime

Okay, unfortunately my first thought was the fucking 2001 comedy/romance Bubble Boy, so that's cool.

Luckily for you I've been in the reddie fandom hardcore since 2016 so WE KNOW ABOUT ASTHMATIC HEADCANONS IN THIS HOUSE.

I think I'd pick like severe asthma because it just jives for me, but if you wanna go crazy we could really have a fucking Fault in our Stars/Five Feet Apart moment here. Really lean into locorro or spiri here.

-Spider lived with Norm for years because he was the foster parent they had with the most medical experience, but eventually he just was LIVING with Jake and Neytiri .

-Stay at home wheelchair dad Jake Sully with his three little kids under three had none of the attention or free time to dedicate to a kid with medical issues, but him and work from home Norm become a seamless team in the kids toddler years.

-Neytiri had just finished her residency so she was simply flawless with him. He's pretty much a normal kid, he's just got bad asthma. He does all physical activity he can, but he gets out of breath quickly and has to stop for a puff or two before he can get back out there.

-Neteyam is younger but they're in the same grade because Spider got held back because he was so lil because he was a sick kid before Neytiri and Norm got a hold of him.

-He carries around an inhaler and Neteyam also carries around an inhaler because Neteyam may be younger but he is so protective of Spider and so worried about him losing his breath when they are at school and their parents aren't around.

-Tonowari and Jake meet at the playground on a Saturday and all of a sudden Jake is an after-school care, watching his own four kids and Ao'nung and Tsireya (and neighborhood latchkey kid Rotxo who Spider loves because he was also a latchkey kid).

-Ao'nung gets mad at Spider during a game of pickle where they are both the taggers because Spider stops to tag a puff. Ao'nung insists he has to keep going and Spider does and ends up passing out.

-He's not allowed to run or do anything strenuous for two days and Ao'nung is grounded by Ronal for a week. Neteyam and Kiri don't talk to him for a day. He feels really bad though and after that he yells at any kid who tries to get Spider to do anything physical at school until a teacher has to call home and they all have to have a chat lol.

-Neytiri and Norm we're absolutely unbearable for days, hovering over him and making him drink water, while Jake was treating Spider exactly the same. They are disability buddies and Jake would never treat Spider as fragile because he isn't. In fact, they played catch later that night even though Spider was sitting down and it gave Neteyam an aneurysm.

-Lo'ak always explains to strangers that his brother is cool he just has "shit lungs" because he heard Jake say that one time.

-Reddie moment: "Spider Sully Blasts Off!" every time he uses his inhaler.

#bubble boy is so spider coded #neteyam is prematurely grey in every universe #but especially in one where spider is chronically ill and has lo'ak as a sibling #a lot of this is taken from my kid at work with asthma #also i can't even get started on the myriad of ways lo'ak almost kills spider on the daily #it reminds me of my brother and our close family friend #theyre basically siblings #she is deathly allergic to eggs #and my brother is constantly sticking his knife in her butter or offering her some of his food or accidentally taking her fork #were always like are you trying to kill jessie??? #imagine this but lo'ak while they have family dinner and everyone else has a spice deadly to humans and spider's bowl is human safe #lo'ak sticking his fork in spiders bowl: can i have a bite #eberyone: oh my fucking god #skksks #miles spider socorro #spider socorro #spider sully #jake sully #neytiri sully #neteyam sully #kiri sully #lo'ak sully #norm spellman #ao'nung #tsireya #tonowari #ronal #rotxo #avatar #avatar the way of water

[kirby-the-gorb]

#kirby #daily kirby #my art #digital #hal laboratory #nintendo #ask to tag #favorites #I've been really super disproportionately tired lately #even beyond the usual debilitating fatigue from my severe chronic illness #so I'm putting myself back on my prednisone in the morning. #it is not a long term solution but it's what I've got. #I've got enough stocked up to take a fairly safe dose until I'm able to actually access a doctor back home in june #cuz I've been struggling physically since way back in july but it's getting to the point where I can't just tough it out anymore #yesterday I was having a lot of difficulty speaking #today I was having a lot of trouble moving at all #and it's not a typical acute flare that clears up after a day. #so like. not in a position to be completely immobilized just yet. #(once I get home our other partner can take care of me and it matters much less if I can't move) #(but my wife can't do that while she's still working this job and our other partner isn't here) #(so. need the temporary power up.)

[rosesandthorns44]

I lowkey forgot how helpful my grabber tool is for tidying up my room...

I can sit in a central location and just pick trash/laundry/recyclables and put them where they go!

I've had the dang thing for probably close to a decade. Why don't I use it? IDK. Internalized ableism? Imposter Syndrome? Denial?

I always tell myself, "I'm better now. I don't need all those things anymore," and avoid using any assistive devices unless I'm in so much pain I can barely move. It's bullshit! I'm making things so much harder for myself.

I keep thinking about getting a rollator so I can get out of the apartment more on my days off. Then I tell myself that's being overdramatic, and i don't need it. Lately, I'm resistant to even using my cane.

I get scared to go places on my own in case I get too tired! Clearly, I need SOMETHING.

I didn't use to be so self-conscious about visibly appearing disabled. It's more since I've entered the workforce, and I'm the only one at my company who uses mobility aids. Also, I got severely harassed/discriminated against by my ex-boss (reported her ass and got her fired!).

I'm fucking tired of being the odd one out at work and working in a completely NOT accessible building where the only mobility aid I even have the option to use is my cane.

Heavily considering applying to an independent living center a few cities over so I can be amongst peers and do some good for the local disabled community. It's just hard to make the leap and change careers.

#disabled #disability #ableism #internalized ableism #chronic illness #ehlers danlos syndrome #gastroparesis #idiopathic hypersomnia #chronic pain #dysautonomia #mobility aids #assistive technology #assistive devices #working while disabled

[natjennie]

anyone else out here a middle child saddled with eldest daughter responsibilities?

#a bumper sticker that says 'middle-child neglect and eldest-child duties' #i want to believe it started when my older sister moved out but. lets be real. it's always been me. #i am genuinely acting care-giver to my chronically ill younger sister while my dad watches basketball on the couch #and my mom doesnt get out of bed. #like. my mom is pretty sick too and works all day and does most of the housekeeping too #so i dont blame her at all. #i mean i guess my dad works all day but. for real king you can't get up off the couch to support your daughter crying and heaving #no that falls to me. yeah yeah I'll get her a drink and make sure she takes her meds. #what's that? yeah I'll rub her back and run a cloth under the sink and bring her something to eat too. #oh? yes fine I wont take a gummy so i wont sleep because she's in a flare up and needs them more than me #to be clear!! I'm not blaming her either like clearly she feels like shit and she feels guilty all the time #i just. some amount of help from anyone else. or at least maybe. idk A DAY I can rest when i feel like shit #but oh- no- she's coughing up bile again. yep I'll come bring a bucket.

[thedisablednaturalist]

I feel like my heart is breaking. I hate this stupid disease. I hate my spine. I hate my knees. I hate this stupid body. I hate my nerves and my brain. I want to move I want to be outside and work and do physical labor. I wanted this job so bad. I feel like my dream is shattered. I love being a physical science technician. I'm not meant to sit in an office all day. I fucking hate this. I spent over 10k last year trying to fix this stupid body. To make it work. To be able to meet the minimum standard to do my job. I've worked so hard for this. I've been through so much pain, more pain than most people will experience their whole lives in just 4 years. And for what? I can't play with the big boys? I can't be trusted to do the job I've been doing for over a year? Because of some doctor's opinion? I feel cheated and excluded. I can't stop crying.

#wrenfea.vent #chronic disability #chronic pain #spoonie #fibromyalgia #degenerative disc disease #disability #chronic illness #working while disabled

[divinesouldariax]

it doesnt have to hurt more to be love!

it doesnt have to hurt more to be love.

there’s been a lot of very good meta about ashton, taking hits, carrying his friends, carrying heavy things for their friends, doing things that hurt, that make it hurt worse, to protect his friends from pain. because he knows how to carry pain. because they’re used to it. because they know he can keep going. because, because, because it’s what he knows, it’s all he knows.

and it’s true. ashton loves them. ashton is willing to hurt more for them, and it’s because they love their friends.

but, but, but. he shouldnt have to. people with chronic pain shouldnt have to do things that make the pain worse. we might choose to, and that is definitely an act of love, but feeling like they dont have a choice, that taking on more pain, silently, suffering without ever asking for help or saying no, i can’t do that, it hurts too much...

because, listen. for most people, chronic pain is limiting. it says no, we’re not climbing those stairs today. no, we can’t lean down and pick something up off the floor. no, we’re staying in bed with a heating pad and telling our friends sorry, i can’t make it today after all. i know you were looking forward to hanging out, but i can’t do it. maybe there’s some people with chronic pain that never have days bad enough that it limits them, but i’ve never met one.

so when i see ashton, whose friends didn’t figure out that he has chronic pain until they literally felt it in his mind, keep their pain under wraps for over a month, never saying no to carrying something (a heavy statue, fcg up a ladder, orym after he fell, laudna’s dead body for miles), swinging his hammer to defend and protect, literally picking losing battles to see if anybody is watching...to me, that doesn’t read as “look at this strong, empowered person with chronic pain who never lets it limit them”.

to me, that says “this is a person who thinks that love cannot exist without a worsening of pain, who won’t let themself pause or say no or even tell anybody that it hurts because he is deeply, deeply afraid that refusing pain is the same thing as denying his friends love”.

and that’s fucking devastating.

it doesnt have to hurt more to be love.

#ashton greymoore #critical role meta #critical role campaign 3 #bell's hells #there is a secret second part to this post #where i gently criticize matt and tal for not including some kind of Disability Mechanic #because i KNOW they can do it. they do it for caleb and fcg and imogen #but i'm still holding out hope that they have a secret one that they're waiting to reveal #based on a specific event or trigger for a flare-up #just. something something mental illnesses being given the opportunity to be Actually Disabling in this work of fiction #(which it SHOULD be. i'm not saying they shouldnt have done any of those ones.) #while physical disability is a handwavey/barely acknowledged flavor #let disabled characters be Disabled. Disabled means they are LIMITED in their ABILITY to DO THINGS. #.....i didnt mean to do the whole rant in the tags but apparently i did it anyway lmao #anyway. able-bodied people dont clown on me for this. #ill block u. #edit: i focus on chronic pain here bc thats what i personally have experience with #but obviously ashton has a traumatic brain injury which is also a disability #and i wouldnt want to ignore that just because it's not something im as intimately familiar with