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@chronicillnesstruths
disabled people who are unemployed are not living it up and having the time of our lives just because were unemployed. the tradeoff for not working is LITERALLY BEING DISABLED AND HAVING TO LIVE IN CONSTANT PAIN EVERY DAY WITH NO BREAKS. if that seems fun or relaxing to you then idek what to say.
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When I finally find the right doctor and he retires a few months later...
I need a piece of medical equipment. Insurance should cover it. But Medicare has decided I don't "qualify". My testing levels would qualify me with any private insurance in the state, but Medicare uses different testing criteria - based on studies done on men 50 years ago! WTF, Medicare?
The cost to me: $3500 now, and probably $1000-$2000 per year.
Also, why would they not cover this? I've been using this same equipment (it's simply gotten worn out so I need a replacement) for nearly a decade. Who would want to use this stuff if they didn't have to? It's not like there's a black market for it or anything. Denying coverage is simply cruel.
This story isn't in the book (since it's a new problem) but others are. If you want to read about what it's like to live with chronic illness, check out The Things We Donât Say: An Anthology of Chronic Illness Truths at https://books2read.com/u/bOXvwg
I just won't get tired of this photo of my adorable Larry sniffing my book, The Things We Donât Say: An Anthology of Chronic Illness Truths
Get yours in paperback or ebook at https://books2read.com/u/bOXvwg
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
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Why the fuck is it so hard for able bodied people to get their heads around the fact that specifically physically disabled people are not actually accommodated most of the time?
Whether it be the inaccessibility of a building due to stairs, heavy non auto doors, ramps that are too steep, broken elevators or just non existent elevators, etc the list goes on and on. Or now public spaces that letâs say are otherwise perfectly accessible are now inaccessible to so many people because so many people refuse to wear a fucking mask when it would cause then no harm (maybe just a bit of sweat) to wear one.
The fact that abled people donât see just how fucked up and inaccessible the world is blows my fucking mind. Just because someone âcanâ do something or go somewhere doesnât mean they should have to do that or that itâs safe for them to do so. Like sure I can do stairs but holy shit by the time Iâm at the top Iâm in so much pain and I feel like Iâm gonna pass the fuck out man.
Bottom line, the world is really fucking inaccessible and that needs to be fixed. Physically disabled peopleâs voices need to be listened to and not talked over by ableds who think they know whatâs best for us or who think the world is perfect as it is
if upon being told about someones illness/condition, your first thought is to say âhave you tried X?â i want you to step back for a moment and think to yourself âif i thought of X after hearing about this condition for the very first time, the person who has this condition very likely has thought of this and possibly tried it alreadyâ
we are tired of constantly being told to try the same things by people who didnt know our condition existed five minutes ago.
you dont need to offer any solutions or try to fix us. i know it might seem like a polite thing to do or that it shows you care, there are other ways to show us you care.
happy disability pride month to people with visible differences
happy disability pride month to people for whom being "visibly disabled" or "obviously ill" doesn't make people believe you or doctors diagnose and treat you and then you have to see people saying otherwise, constantly, forever
happy disability pride month to people who are afraid to take and post selfies and to people who are afraid to dress up and to people who are afraid to go out (and to people who fucking can't anymore) and to people who are afraid to date because of their visible differences
happy disability pride to people who are having to watch their illnesses and disabilities become worse because it is a change they can see
happy disability pride month to people whose illness or disability affects how their face looks and moves especially
happy disability pride month to people who only ever see their disability represented as a joke
happy disability pride month to people who have become visibly different but weren't before
and happy disability pride month to people who are visibly different and visibly i/dd, cognitively disabled, or severely mentally ill because i know people treat you worse when you're both
Larry and I are thrilled to announce that The Things We Donât Say: An Anthology of Chronic Illness Truths is 40% off in ebook through this Monday, March 27. And for part of today (March 25) itâs 66% off on Kindle! Now's a perfect time to grab your copy, and maybe get one for a friend, too. The link will take you to paperback, Kindle, Apple Books, Nook, Vivlio, Smashwords, and more. https://books2read.com/u/bOXvwg
Are you looking for stories about people like you with chronic illnesses? Are you tired of feeling alone? Larry thinks you should check out The Things We Donât Say: An Anthology of Chronic Illness Truths, available as a paperback or ebook at https://books2read.com/u/bOXvwg or possibly at your local library if you ask them to get a copy.
[Image description: Photo of a tan and white shih tzu puppy leaning his head against a paperback book with a blue cover and the outline of a head made out of tan thorns with the title in the face]
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I think thereâs a lot of people who donât realise this, but if youâre walking down a pavement and see a wheelchair user is coming the other way, please step to the outside of the pavement (closest to the road) and let the wheelchair user pass by on the inside (assuming of course that you can do so safely).
Itâs not the end of the world if you donât, but in general, getting a little too close to the edge of the pavement on foot is way less dangerous than a wheelchair user potentially falling off into traffic.
I use a powerchair and I canât see or feel exactly how close to the edge of a pavement my wheels are, and if my chair falls into the road Iâm properly screwed because my chair is so heavy it would take several people to get me upright again. Someone whoâs walking is more aware of where their feet are in relation to the pavement and, if necessary, can usually step on and off the pavement briefly and remain upright and un injured.
and not to mention that the pavement camber is usually steeper near the kerb, so making especially a manual wheelchair user move nearer the kerb is making us work twice as hard to move in a straight line, and it's exhausting doing that
Exactly. Sidewalks can be (literal, in my case) nightmare fuel.
As a disabled person, I'm telling you right now:
Act disabled.
Stop telling yourself you're acting more disabled than you are.
Crawl to clean your room, use a wheelchair when you're "only" at level 3 pain, wear all the wraps and ice packs
Allow yourself to act disabled and you'll see that it helps you a whole lot when you allow yourself to use any and all tools
if you have a chronically ill person/someone with chronic pain in your life, sometimes the best thing for you to do is just sit with them and watch a movie. understand that they are in a lot of pain, and there isn't much you can do but be with them, bring them snacks, and let them know that you care
I'm neurodivergent as well as disabled and "10 minute blocking" has changed my life.
I find completing tasks really challenging because I either get super overwhelmed, distracted, or my pain/fatigue levels rise too much and I get defeated.
So I recently introduced the 10 Minute Block rule. It's super simple. I simply pick one thing I need to do, set a timer usually for 10 mins (+/- 5 mins depending on fatigue/pain levels) and then go go go! And I try and do as much of that one thing as I can within the time limit. The rule is that I have to stop after 10 minutes.
If I feel spurred on after the 10 mins is up, then I'm free to start another 10 minute block (either to carry on with the same task or start a new one) and do this repeatedly for as long as I wish, but I absolutely must stop after each block and assess how my body is doing and finish blocking when my body tells me to.
If I am feeling defeated or tired or whatever after 10 mins, even if the task isn't finished, I stop. I rest, congratulate myself on doing those 10 minutes, and then find something fun/restorative to do instead without feeling guilty.
It's really improved my perception of productivity as well as taught me how to pace my body better.
I don't know if this will be helpful to any of you, but it's something that I wish I'd known about sooner and has helped me so I thought I'd share it.
are you disabled or suffer from other chronic conditions that often leave you bed bound? do you often feel like youâre in the âdamn bitch you live like this?â meme because cleaning is too exhausting?
my protip is get yourself one of THESE bad boys and hang it by your bed
itâs an over the door shoe rack and the pockets are perfect for holding a lot of household objects.
you can use the pockets to store trash, snacks, meds, and water bottles. if you worry about hygiene, you can also keep some for dry shampoo, deodorant, body wipes, clean undergarments, or toothbrush materials. on good days, you can clean it out and restock it, or have someone else help you. on bad days, you wonât have to worry about getting food and youâll be able to feel a little better about hygiene.
itâs also really great if you want to keep your hobbies close by!! i can often only work on my bed, and then i have to worry about putting everything away if i have to lay down. if itâs a hobby that has materials that can be stored in the pockets, it can feel more accessible to jump in and out of and take less spoons to set/clean up.
Anya is live and ready to show you everything. Watch her strip, dance, and perform exclusive shows just for you. Interact in real-time and make your fantasies come true.
Free to watch ⢠No registration required ⢠HD streaming
[Picture ID: Post from Upgrade Accessibility on Twitter, username upgradeaccessi1, posted on June 30, 2022. Tweet reads âWhen the clock strikes midnight, it will be Disability Pride Month. There will be no flashy merchandise. Companies wonât be changing their logos. Celebrities wonât be posting on social media about it. And the disabled community still wonât have equity or equality.â End ID.]
I dont know who needs to hear this
But I sure did:
You can and absolutely should modify the chore/self care task if it makes life easier. Sit on the floor while doing laundry. Clean dishes while in a chair. Sit in the shower.
Save your spoons. Accommodate your fatigue rather than fighting it.
