chronicillnesstruths

[chronicillnesstruths]

When I finally find the right doctor and he retires a few months later...

[chronicillnesstruths]

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 Don’t Say: An Anthology of Chronic Illness Truths at https://books2read.com/u/bOXvwg

#chronic illness #spoonie #chronic fatigue #chronic pain #invisible illness #disability #invisible disability #anthology #sleep apnea #medicare

[chronicillnesstruths]

I just won't get tired of this photo of my adorable Larry sniffing my book, The Things We Don’t Say: An Anthology of Chronic Illness Truths

Get yours in paperback or ebook at https://books2read.com/u/bOXvwg

#chronic illness #chronic fatigue #chronic pain #disability #invisible disability #spoonies #invisible illness #anthology #spoonie

[chronicillnesstruths]

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 let’s 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 don’t see just how fucked up and inaccessible the world is blows my fucking mind. Just because someone “can” do something or go somewhere doesn’t mean they should have to do that or that it’s safe for them to do so. Like sure I can do stairs but holy shit by the time I’m at the top I’m in so much pain and I feel like I’m gonna pass the fuck out man.

Bottom line, the world is really fucking inaccessible and that needs to be fixed. Physically disabled people’s voices need to be listened to and not talked over by ableds who think they know what’s best for us or who think the world is perfect as it is

[chronicillnesstruths]

if upon being told about someones illness/condition, your first thought is to say “have you tried X?” i want you to step back for a moment and think to yourself “if 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 already”

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.

[chronicillnesstruths]

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

[chronicillnesstruths]

Larry and I are thrilled to announce that The Things We Don’t Say: An Anthology of Chronic Illness Truths is 40% off in ebook through this Monday, March 27. And for part of today (March 25) it’s 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

#chronic illness #disability #invisible illness #invisible disability #chronic pain #chronic fatigue #spoonies

[chronicillnesstruths]

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 Don’t 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]

#chronic illness #chronic pain #chronic fatigue #disability #invisible illness #invisible disability #invisible chronic illness

[chronicillnesstruths]

I think there’s a lot of people who don’t realise this, but if you’re 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).

It’s not the end of the world if you don’t, 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 can’t see or feel exactly how close to the edge of a pavement my wheels are, and if my chair falls into the road I’m properly screwed because my chair is so heavy it would take several people to get me upright again. Someone who’s 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.

[chronicillnesstruths]

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

[chronicillnesstruths]

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

[chronicillnesstruths]

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.

[chronicillnesstruths]

are you disabled or suffer from other chronic conditions that often leave you bed bound? do you often feel like you’re in the “damn bitch you live like this?” meme because cleaning is too exhausting?

my protip is get yourself one of THESE bad boys and hang it by your bed

it’s 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 won’t have to worry about getting food and you’ll be able to feel a little better about hygiene.

it’s 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 it’s 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.

[chronicillnesstruths]

[Picture ID: Post from Upgrade Accessibility on Twitter, username upgradeaccessi1, posted on June 30, 2022. Tweet reads ‘When the clock strikes midnight, it will be Disability Pride Month. There will be no flashy merchandise. Companies won’t be changing their logos. Celebrities won’t be posting on social media about it. And the disabled community still won’t have equity or equality.’ End ID.]

[chronicillnesstruths]

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.

[chronicillnesstruths]

How to help millions of disabled Americans

The SSI Restoration Act of 2021 is currently proposed to congress. We have until 2023 to get it passed (this post is dated March 30, 2022). SSI is a type of disability payment for disabled Americans. The bill will increase the SSI payment to the poverty level. Right now the maximum payment is 9528$ a year. It will allow disabled people on SSI to marry and not lose their income which they cannot do currently. Disabled Americans do not have marriage equality currently. It will increase the asset and income caps for SSI among other improvements.

Friends and I made a website that has all of this info plus a really easy way to send an email to your state reps. If you click the link below, you can send a letter of support for the SSI Restoration Act to your state reps. It’s already written and takes only a few minutes. Seriously it is ridiculously easy. These emails have more pull to reps than resistbot so please fill out if you can!

With our letter campaign, people have sent over 5,000 letters to representatives! We've decided to make a new campaign with updated information to send to reps. So if you have already sent one through fixssi.com, you can send another! And if you haven't please take the time to do so!

We also have a Facebook called "Campaign to Fix SSI" that you can follow for regular updates as well.

And if you are able to call state reps (which has the most influence) our website has a call script and lists of your reps phone numbers. Please follow the link below for that.

Please send a letter to your reps and boost! It could change the lives of millions of disabled Americans.

[chronicillnesstruths]

shoutout to chronically ill people who are never getting better ❤️‍🩹💕 you are worthy in the future and you are worthy now