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#chronic illness
yieldingcontronyms · an hour ago
Labels and understanding don't make one sick, one's experiences, one's reality, are what makes one sick
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puzzleddragon02 · an hour ago
Being in pain can be really boring. Specifically, being in just enough pain that I can’t fall asleep, but not enough pain that it’s upsetting. It’s after 1:00am now, which means I’m hungry, which means I had to actually get out of bed and get a snack. 
I was proud of myself for getting to bed at 11:45pm, instead of the usual after midnight :( 
At least I tried.
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disabledprincesses · an hour ago
How to make your backpack/book bag lighter:
- digital textbooks and e-books. Even if you gotta do it by taking pictures of the 10 pages you need, its better than carrying the 450 page book
- digital notes; honestly just make all your stuff digital
- consider an ipad with a light keyboard if you have a heavy laptop
- bring a water-bottle but have it empty. Fill it up once you get to school/class so youre not carrying a full one
- bring as few pens/pencils/highlights etc. as possible. Honestly at this point I could just bring my stylus and a pen with me
- if you really want to use notebooks (or if you're just broke) try to find very small ones
- or better yet, just put some loose leaf paper in your folder
- try not to have a bunch of stuff on your bag like keychains, pins, etc. it may not seem like a lot but every little bit is important sometimes
- get a bag with a really light material
- this is kinda off topic but especially if you have shoulder pain, please for the love of God don't just use one shoulder, or have a tote or purse where its on one side. It suuuuuucks
- only bring one or two fidget toys
- lastly, if all else fails, just get a rolling backpack. They make noise on certain types of ground, but sometimes you just gotta
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disabledprincesses · an hour ago
Live a beautiful and fulfilling disabled life
Not because you have to
But to spite every ableist that says you can't.
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disabledprincesses · an hour ago
My joint pain has started to come back and it's so weird because I thought I was "over" that.
Like I went so long without joint pain
But now it's back
I thought maybe I didn't have to worry about figuring out what it is
Damn it.
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atiredfibrowarrior · 3 hours ago
My doctor after prescribing new meds: Remember, don’t suddenly stop taking these. You will need to slowly ween off of them otherwise you will go through really bad withdrawal symptoms and you will feel like trash.
Me: Understood.
Me: Hey, I ran out because you only give me three months at a time. Can you please prescribe me more?
My doctor: Yeah of course :) *takes almost an entire month to send the refill form to my pharmacy*
Me, going through horrible withdrawal symptoms, feeling like complete trash because I ran out of my meds weeks ago and he still hasn’t sent the form yet:
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instantbouquettriumph · 3 hours ago
Yesterday I officially became a coachart volunteer
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hauntedhearse · 3 hours ago
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a particularly good makeup day ∞
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chasingtheskyline · 4 hours ago
you know what i wish existed? a place where people with disabilities and chronically ill people could go during flareups that isn't as high-level or medicalized as hospital but also not as like, fun or therapy-focused as a respite center or rehab, and also not regular daily/weekly care. does that make sense?
where do you go when you live alone and your joint inflammation just will not quit. and you just want some kind people (cna not in scrubs) to help you bathe, get you in new pajamas, feed you a hot meal, and get you bundled up in bed quite tidily until you can walk again in 3 days. maybe 4 or 5 other ill people are also there but you don't have to share a room. there's a common room with a fireplace and comfy sofas. little bedrooms with sensory-safe linens and duvets instead of white blankets. absolutely no fluorescent lights. a freely accessible station with hot water bottles and cold packs and lidocaine and CBD cream and plushies. chef on call. bring your own drugs, it's all good.
of course people who need heart monitors and apnea machines and ivs and things will have them, but there's no constant beeping and no doctors rushing in and out, no one telling you bad news or preparing you for something painful. just quiet, or reading, or music, and conversation and laughter, but nothing forced. and then once you feel better, you go home, and you are stronger than you were before. but you feel secure as well, because when you flare again, you will be taken care of.
this shouldn't have to be a fantasy, but it's quite a comforting one.
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aesopfabled · 4 hours ago
I agree it’s rude when (usually older people) comment about your illness, that they don’t know the full story of, and say to try exercise, yoga, change in diet, vitamins, prayer, etc....but honestly, they’re just trying to help out and not aware of the whole situation. I’ve never been offended by it, especially because those are helpful coping mechanisms for chronically ill people. There’s a lot of asinine jerks who believe it’ll somehow cure you without knowing you or wanting to understand your illness, but there’s also older people, with their own age-related chronic illnesses, who are trying to mentor and give advice on coping with the pain with a generational gap in communication style.
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thehugwizard · 4 hours ago
Mr. Wizard I'm a hot anxious mess now
In my school, you have to spend 5.5 hours a day logged in and the system keeps track
Due to covid earlier in the school year, chronic illness, and reactions to the vaccines, I was behind. About 64 hours, as of 2 days ago. 72 misses hours gets me unenrolled so I try really hard to avoid it every year.
But somehow, even though I've put in MORE hours than required these last two days, I now have 84 hours missed. It doesn't add up but the system might automatically unenroll me 3 weeks before school ends.
I can email my homeroom teacher but he's proven to be useless here
Oh no!!!!! Thats nuts, that a massive confusing and weird!
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faeheart · 4 hours ago
it's been over four years now since i quit dance and i still feel a little insane whenever i think about it but i'm starting to accept that. because it would be worse to feel indifferent about something i used to love so much i thought i couldn't live without it ya know
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deafinitelyhear · 5 hours ago
because sometimes...a rant, a cry, and a hug is all a person needs
That’s right…I would tell any disabled person out there. (including myself)
Go on, be miserable, feel like crap, have a spell to rant and vent all you’d like. I can vibe with that. I can be your emotional punching bag if you need a friend. I get it. I’m not offended. I know you’re angry. I know you’re bitter. I know you feel like it’s not fair…and…why you?
I get it. I’ve been there. I’m there. I understand.
My feelings won’t be hurt if you need to tell me how much you hate the world or you hate me for being a part of it.
My feelings won’t be hurt if you tell me I could be a better friend or do more for you.
My feelings won’t mind if you say you don’t have the time…but just tell me. The truth is all I ask. I accept you, good and bad. And if you need to take it out on me for a minute, I get that.
As long as you’re not really hurting anyone, I can take your rant. I can share the burden of your pain. I can feel it, too. I can feel it with you.
But not if I don’t know.
I’m not magic or psychic or amazing like that. I can’t read minds or know what you’re thinking or feeling at the drop of a hat. You have to tell me.
I can be there for you if that’s what you need. I won’t beg anyone to tell me or let me know anything.
But if I do know your situation, I have empathy…
because I wish someone had empathy for me.
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asphyxiatedredherring · 5 hours ago
I was going to look cute tomorrow and wear a tight little jimi hendrix shirt but now I have a bench of wires strapped to my chest so guess that's out the window
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uunicorns-n-shit · 5 hours ago
Hey guys, I know I'm not too active at the moment, but I need suggestions to help a friend. She's waiting on tests, but it's pretty much guaranteed she has rheumatoid arthritis. It's worst in her hands, like to the point she struggles moving them sometimes. The problem is that she has fairly long hair, and she's really struggling washing it. So does anyone have suggestions for washing hair with limited hand mobility??
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libbywednesday · 6 hours ago
I’ve had a debilitating back ache today and a combination of painkillers and heating pads has TAKEN AWAY 80% OF THE PAIN and that’s fucking EUPHORIC
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Let’s play a game called, “Why Am I In Pain?”
Is it:
a) because I’m on my period
b) because of my chronic illness
c) because I got my second dose of the COVID vaccine this morning
Or d) all of the above
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