#chronic fatigue
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as much as i appreciate the intent of the “being disabled doesn’t make you a burden” type posts, i don’t really agree. a lot of times being disabled DOES make you a burden
& i think that maybe we should try to shift focus to the fact that even if you’re a huge burden on society and can contribute absolutely nothing, you’re still a human being who deserves to exist.
like. there’s nothing morally wrong with being a burden on other people. you aren’t a bad person for needing to rely on others. you’re allowed to be a burden & disabled people who are burdens on others, i love you
#sorry ive seen a lot of the ‘youre not the burden it’s your illness that’s the burden on you’ type posts#and i appreciate what you’re trying to say but like fr ur allowed to be a burden#thats part of being a person. it’s ok#disability#disabled#chronic fatigue#chronic pain#0
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#fibromyalgia#chronic illness#chronic pain#chronic fatigue#spoonie#fibro#chronically ill#invisible illness
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when you accidentally pull an all-nighter because you spent the whole nighy trying and failing to fall asleep
#and you have medical conditions that are exasperated by poor sleep#chronic illness#chronically ill#chronic pain#chronic fatigue#disability#disabled
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My coworker has had some wrist issues lately, I think it’s temporary but idk. She said “it’s weird having to think about whether something will hurt before deciding if I should do the task” and just
Hearing my own experience on a daily basis described by my able bodied coworker as EXPLICITLY abnormal was like
Surreal
#physically disabled#physical disability#physical health#actually disabled#disabled queer#crip punk#cripplepunk#cripple punk#chronic disability#chronically ill#chronic illness#chronic pain#chronic fatigue
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EDS can make you feel like you’re rotting inside but at least I’ll never have to pay for collagen infused products you win some you lose some. Mostly lose, mostly lose.
#heds#ehlers danlos problems#hypermobile ehlers danlos#hypermobile eds#chronically ill#chronic illness#chronic pain#chronic fatigue#funny#idk
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it sucks being the only young person in your family who's chronically ill/physically disabled
like im glad they don't have to go through the same thing i do but it feels so lonely
why did it happen to me and no one else? why was i singled out like this?
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Just for fucking ONCE I would like a disability-related service, for which it is *incredibly* common to have a lot of other commitments *and* capacity to do things that change a lot unpredictably at the last minute, not to be based on “to use this service you need to be able to plan meticulously ahead for months to use this service with no absolutely zero flexibility to change anything based on last-minute illness” and/or, depending on their needs, “to use this service you need to be *absolutely* flexible, available to do it at half an hour’s notice when we call you, with no capacity to contact them to reschedule”.
With no option to communicate with them in any other way than phone, despite the numbers of us who find phone communication incredibly difficult, and no accommodation for any reality between “you can clearly do absolutely everything needed to access this service yourself without any form of aid or assistance” and “you have a FT carer that’s with you constantly who clearly has absolutely nothing to do other than wait for this service’s convenience”.
The idea that, if you are a disabled person, you have nothing else to do with your time other than wait around for x service’s convenience, no need to schedule vital assistance from either a paid carer or informal care from family and friends so you can access said service, and your capacity will be constantly uniform throughout the day, month and year, is so fucking far from the experience of literally every disabled person I’ve ever met.
And if you can’t meet these requirements then clearly you “don’t really need it”.
*screams*
#disabled#disability#chronic illness#disableism#chronic pain#chronic fatigue#heds#yes my stairlift has been broken for nearly a fortnight now#aaaaaaaah
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There’s this narrative that’s so pervasive, that chronically ill and disabled people will one day find their perfect coping mechanism and that it will make their life easier. If they “just” eat better or “just” stretch every day it will unlock a secret shortcut to being able bodied but it’s just not true.
You can do everything right and still be ill.
Sometimes it doesn’t matter how hard you try, how many different methods you use, how frustrated you are. And even when you find something that works it doesn’t work 100% of the time, sometimes it makes things worse! And it’s completely random! Please can we end the narrative of “if you just learn enough about your disability you can overcome it” because it’s exhausting and frankly impossible to try and live like that.
#this is based on the experiences of me and three of my friends#but I’ve seen it echoed by many disabled people#my post#chronic illness#chronic pain#chronic fatigue#disability#disabled
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One of my least favorite things is when my heart decides it wants to act like I’m running a marathon at 4am as I’m trying to force myself to sleep.
#like whose decision was this?#cause it sure as hell wasn’t mine#young and disabled#pots syndrome#chronic illness#disability#hypermobile spectrum disorder#chronic fatigue#chronically ill#disabilities#disabled
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Taking Care of Chronic Littles! Hospital Advice :)
~ in recent events, we've realized that there isn't as much support or advice for littles who are usually always in doctors or always sick, so we want to change that!
(making a second version for if u dont have a caregiver, but u can also follow this advice for yourself!)
Remember to be patient with your littles!!
- being in a hospital or even a simple doctors appointment is so so so scary. letting them know that you're there and being patient with them can help a whole lot more than you think.
Asking your little what would help
- sometimes we all want to be heroes and fuss over little things, trying to help every chance we get
- however, asking what could help your little most and what would be comfortable can go a whole much smoother than trying to fuss and being too overbearing.
Being encouraging about med taking
- i know when im little, i hate taking medicine. it can be so scary and yucky! especially if it's pills.
- just being patient and trying to make it more enjoyable for your little can help!
- some examples:
- making it a game
~ try to make it fun for your littles, as fun as you can!
- offering treats afterwards
~ a small treat will go a lonngggg way :3
Trying to find good coping mechanisms
- finding a good coping mechanism for both you and your little is essential for anything
- sometimes being in a hospital can make your little panic, and panicking while already feeling icky is terrible! having these coping mechanisms will help both of you stay calm and assess what you need to do
Making sure to take it easy
- taking it easy after something big like this is a MUST. you don't want to end up in the loop again so soon!
- maybe stick to just cuddling, reading, watching movies, etc.
- making sure to listen to what is comfortable for their body and what is not, their usual little clothes might feel too tight or icky when feeling sick
Reassure your little
- needing all this help can feel really selfish at times, reassurance can be a big thing
- reassure your little that this is not their fault and that it will be alright
- and making sure to reassure littles that they will get better helps too, because with all the chaos and icky feelings, sometimes we just need a reminder that this is just a small hiccup and that it'll pass
{ That's all my advice, lovelies, but i hope whoever finds this has a wonderful day/night and that this helped at least one person <3 }
#rui fictive agere#sfw agere#age regression#sfw regression#pet regression#sfw petre#chronic illness#chronic pain#chronically ill#chronic fatigue#mental illness#invisible illness#chronic illnesses#mental illnesses#pots syndrome#epilepsy#chronically fatigued#chronic health issues
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#disability#chronic pain#fibromyalgia#chronic fatigue#chronic illness#long covid#sleep disorder#activism
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can someone please invent a body that doesn’t hurt
#i wanna sleep but my body hurts so much 😭 ow!!!!!!#chronic pain#chronic fatigue#disability#disabled#0
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#fibromyalgia#chronic illness#chronic pain#chronic fatigue#spoonie#fibro#chronically ill#invisible illness
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Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.
Shout out to young disabled people. We exist.
#disability#actually disabled#young disabled#wheelchair user#cane user#chronically ill#chronic illness#chronic pain#chronic fatigue#functional neurological disorder#cripplepunk
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Sorry I Spent all mY spoons this week already and it's fucking Tuesday. We're heading to the knives
#actually spoonie#chronic pain#fibromyalgia#actually mentally ill#chronic illness#aroace agender#spoonie#chronic fatigue#disability#actually disabled#chronic disability#spoon theory
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chronic fatigue from mental illness and neurodivergency isn't something you can just will your way out of. your nervous system is part of your body. your brain is an organ. the fatigue is real. you're not lazy. so be kinder to yourself. be gentler with your bodymind.
#softspoonie#chronic fatigue#fatigue#mental health#mental illness#chronic illness#chronically ill#mentally ill#neurodivergent#bodymind#depression#anxiety#autistic burnout#disability#disabled
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