#disabledlife — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #disabledlife, aggregated by home.social.
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For those of you following about my most recent emergency hospital stay, operation due to more kidney stones, discovering kidney injury, and placement of stent:
I'm still waiting for news of when my next operation is. I'm managing reasonably well with the stent, although pain is quite high, causing additional issues with my fibro. The combination of meds are making me drowsy, brain foggy on top of fibro fog, and giving me some digestive issues. Overall, could be worse, so I'm hanging in there. Joys of disabled life😁
#kidney #disabledlife #disabled #kidneystones #chronicillness #chronicpain -
YOU’RE LOOKING
AT THE WRONG PARTS 💎I sometimes wonder what people imagine is going on inside the life of someone with a visible disability.
I walk very strangely. My left arm doesn’t work at all. My hand is contracted into a claw. I do everything one-handed, and that clearly wasn’t covered in this model’s original operating instructions.
From the outside, I suspect it can look like a life dominated by disability.
“Poor bugger.” “What a tragedy.” “Everything must be so difficult?”
Meanwhile, inside my actual life, I’m usually wondering whether the coffee is ready, what ridiculous thing I can write on Mastodon, whether the dogs have been fed, or why everyone on the internet has suddenly gone mad again.
The disability is there, obviously. I cannot drive, and there are many things I cannot do unaided. Other things just take longer, because much of the world appears to have been designed by someone who assumed every human comes with two fully operational hands.
And most people are remarkably unhelpful.
That sounds like a complaint, but it has an unexpected benefit. If you’re disabled, you become bloody good at finding another way. You have to.
Eventually, you stop wondering how something is supposed to be done and work out how you can do it.
That doesn’t make accessibility unnecessary. Quite the opposite. But disabled people often become extremely skilled at adapting because the world gives us plenty of practice.
Disability is not the central event of my consciousness.
I don’t wake up thinking, “Good morning. I am disabled.”
I wake up thinking, “Coffee.”
Most of the time, I’m not experiencing myself as a tragic medical story. I’m just living.
I’ve had decades to become extremely competent at being this particular slightly damaged model of human being. Sometimes other people seem considerably more concerned about my disability than I am.
It’s sweet.
But unnecessary.
The odd thing about a visible disability is that people often see what doesn’t work before they notice the enormous amount that does.
And from inside here?
It’s mostly just Friday.
_____________________@DigitalCoup
#Fediverse #OpenWeb #BigTech
@economics_that_works
#Economics #Housing #CostOfLiving
@meditation
#Meditation #Breathwork#Disability #DisabledLife #Accessibility #Hemiplegia #Stroke #Life #coffee #human #medical #instructions #tragedy #Mastodon
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From being abused by staff and other travellers to being denied access to toilets, flying is an increasingly distressing and frustrating experience for many wheelchair users. Here, they share their stories
#disability #disabled #DisabledRights #airtravel #disabledlife #accessibility
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A fun thing about being on different meds after my operation is that my fibro numbers are wonderfully low today😂 Gotta take the good where you can find it😁😉
#fibromyalgia #kidney #disabled #kidneys #disabledlife #cptsd #ptsd
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What’s something healthy people take for granted that you think about every day?
For me, it’s the tiny everyday things that aren’t tiny anymore.
Showering.
Leaving the house.
Standing in line.
Making plans.
Doing one “normal” thing without calculating the recovery cost.Chronic illness changes the way you move through the world.
What’s one thing you wish people understood?
#ChronicIllness #ChronicPain #SpoonieLife #InvisibleIllness #DisabledLife #ChronicIllnessAwareness #Pacing
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in better news, I showered! I hadn't been well enough for three days. #disabledLife
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On a completely different note: I finally started the process of getting new prosthetic eyes.
I've been wearing poorly fitting ones since I was 16. They became too painful and uncomfortable to tolerate, so I'd mostly stopped wearing them.
This week I got new molds made. They might need to be slightly larger next time, though. My ocularist wants me to wear the current shells and see if my eyelids open up more.
I could only manage a few hours before needing a break, so I'm definitely readjusting.
It's uncomfortable. It's tiring. But it also feels like progress after a long time. -
Got expired kidneys in the back. Vintage. No warranty, refunds, or returns. All sales final. DM for questionable pricing & vague info. 😂
#DarkHumor #ChronicIllness #OrganDonorFail #DisabledLifeIf I can’t make fun of my situation, what’s the point in living, right?
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I was productive today. I finished my comic for Friday, continued client piece, and started inking a fantasy map to stay awake. Mysteriously I am not done with my to-do list despite these efforts.
Almost like dishes don't do themselves, important papers don't find themselves, laundry isn't able to crawl from the hamper into the machine by magic and...yeah that's it.
Good that there is some day left because I need a nap. And food that doesn't like to just...appear.
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Disabled? What does the acronym TGIF mean to you?
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3 good things
-IRL visit to SSA office was super easy and effective
-sincere sunshine and blue skies today
-started to titer off an RX I don't like
#3goodthings #DisabledLife -
I am baking (sitting on sofa, with a huge headach, waiting the dough to rise and partner to come home) a loaf of bread.
#baking #bread #DisabledLife #Exhaustion #IWouldKillForSomeThaiFood
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I wrote everyday and read everyday and worked on my projects everyday this week I should be thankful I got fired lmaoooo #disabledlife (I cried if anger but I should see the positives, it's always like this, if I don't see the good I will die)
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It would be very stupid to spend £100 on a new scanner without first trying to find the cables for my old one and giving it a go.
But finding said cables and 'giving it a go' in fact involves way, way more spoons.
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I felt the urge to post a little instagram update - phone can't find the image I took - I give up.
This is why I suck at social media.
(Attatched the photo I wanted to post because this is only Instagram/Facebook/Meta issue)
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Surviving is when you know you are one single bad day away from a disaster that will pull you under for weeks, months, even years...
Living is when you have a breathing room and it takes more than one day to collapse you.
Thriving...I wouldn't know of because I've never been there. I've only had brief moments of living, and mostly endless survival. Like currently.
Today was a bad day.
I am so tired.
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There's so much more walking than I thought there'd be to get to the library, and I desperately wish I was able to use my wheelchair to get over there, because I am in so much pain. However, between the inaccessibility of the sidewalks and public transit and how poor my upper body strength is, that wouldn't be feasible without shit for my chair that I will never be able to afford 😭 #disabled #disabledlife