courtcan, to random
@courtcan@mastodon.social avatar

I have a sinus infection. This is helping.


every day is


tomkindlon, to disabilityjustice
@tomkindlon@disabled.social avatar

On my way to the (on ) protest outside Leinster House (which houses the Irish parliament). These proposals if implemented would make life a lot more difficult for many with and disabling illnesses. 😡

@disabilities @disability @disabilityjustice @mecfs @chronicillness @spoonie

halcionandon, to disabilityjustice
@halcionandon@disabled.social avatar

please

GPs in clinics are waiting for me to:

  1. Go into (I’m not aged.)
  2. To see a (Who works in their clinic.)
  3. Because I don’t fit their business model. (They won’t or me even if I see them once.)

Yes they literally said this.

Someone help me! 😭

@mecfs
@chronicpain @chronicillness
@disabilityjustice



tomkindlon, to disability
@tomkindlon@disabled.social avatar

"Woman told exhaustion was just ‘A-level stress’ overcomes debilitating diagnosis: Elizabeth Hope, who was diagnosed with ME, has since overcome her adversity to become an award-winning wheelchair dancer"

https://www.independent.co.uk/life-style/health-and-families/me-symptoms-wheelchair-dancing-b2450860.html

@mecfs






@chronicillness
@spoonies
@disability

tomkindlon, to disabilityjustice
@tomkindlon@disabled.social avatar

UK Government Response to the Work Capability Assessment: Activities & Descriptors Consultation

The report follows the public consultation & details planned changes to the rules & assessments for existing & new claimants

https://shorturl.at/csAW2

Some people on 🐦 found it less bad than expected

@disability @disabilityjustice @spoonies @chronicillness

tomkindlon, to disabilityjustice
@tomkindlon@disabled.social avatar

(UK)
A worrying development for many with disabilities and disabling illnesses

“Disabled people must work from home to do ‘their duty’, says UK minister

https://www.theguardian.com/uk-news/2023/nov/21/disabled-people-work-from-home-laura-trott-benefits

#disabled #chronicillness #disabilities @disability @disabilityjustice @chronicillness @spoonies @mecfs @longcovid #mecfs

appassionato, to bookstodon
@appassionato@mastodon.social avatar

The Invisible Kingdom: Reimagining Chronic Illness

A landmark exploration of one of the most consequential and mysterious issues of our time: the rise of chronic illness and autoimmune diseases.

@bookstodon
#books
#nonfiction
#ChronicIllness
#AutoimmuneDiseases

tomkindlon, to disabilityjustice
@tomkindlon@disabled.social avatar

I'm considering going to this protest, "“Scrap The Green Paper” coalition calls on the Department of Social Protection to "Scrap the Green Paper" on Disability Reforms." outside Leinster House on Thur, Dec 7.

Main thing that might stop me is my health

https://beacons.ai/scrapthegreenpaper

@disability @disabilityjustice @spoonies @mecfs

tomkindlon, to disability
@tomkindlon@disabled.social avatar
aby, to random
@aby@aus.social avatar

Doctor appt today, and he happily wrote up all the pain relief I needed prescribed for my shoulder.

I thought it might be difficult to get him to prescribe endone, panadeine forte, mobic, panadol osteo, and palexia.. but we went over how I was taking them all and he agreed that I was fine with how I was approaching it - and that taking such a variety of things meant actually taking less opioid based meds because I was able to keep on top of the pain with things like panadol osteo.

We also did my mental health plan and I hit a 40 on the K10.. which is Very Fucking High. We talked about that, and about how therapy is helping and that a big part of the 40 score is probably actually pain related as well.

He agreed that I showed great insight into my illness and that I was comfortable with being vulnerable enough to ask for help, so I get to skip hospitalisation (fucking yay!) because I have a good support system and I know how to access acute assistance if needed.

But still, 40 was even higher than I was expecting tbh. I'm usually around a 25-27.

aby, to random
@aby@aus.social avatar

I feel awful.

I woke up having a hypo this morning and I don't know if I still feel gross after that, if I'm getting sick, if it's a fibro flare, or if my body is just overreacting to the sudden change in temperature.

But I feel exhausted, I have such a headache, and my pain is like a 7/10, and I can feel my brain moving slow like molasses.

aby, to random
@aby@aus.social avatar

I've started a new Fetlife group for disabled people. It was started after it became apparent that the other group was going to allow chasers to fetishise and objectify disabled people and that the group wasn't safe for us.

It's called Disability and Kink

Feel free to join, if you're interested!

https://fetlife.com/groups/273987

sarahmatthews, to bookstodon
@sarahmatthews@tweesecake.social avatar

Louise Kenward has compiled a book of essays on nature, Moving Mountains, by 24 #writers who are living with #ChronicIllness or #Disability and it’s published today! | “Moving Mountains is not about overcoming or conquering, but about living with and connecting, shifting the reader's attention to the things easily overlooked by those who move through the world untroubled by the body that carries them.”
Here she explains how the project came about
https://thepolyphony.org/2022/09/20/storytelling-and-chronic-illness-an-evolution-of-time-and-place/
#nature #bookstodon #reading @disability @bookstodon

halcionandon, to disability
@halcionandon@disabled.social avatar
tomkindlon, to disability
@tomkindlon@disabled.social avatar

The author refers to using the spoon theory so presumably has some energy limiting chronic illness (which is unspecified)

https://www.tumblr.com/i-the-spoonie/724820869881495552

@fibromyalgia @chronicillness
@spoonies
@disability

aby, to random
@aby@aus.social avatar

I have a silent migraine at the moment, and it's so weird.

I have all my usual migraine symptoms - blurred vision, black floaties, dizziness, my eyes are streaming with tears, blocked sinuses etc.. but no pain at all.

It's so strange. I mean, I'm not complaining. If I can switch out all my migraines for this I'll be a happy muffin. But, it's weird!

tomkindlon, to disability
@tomkindlon@disabled.social avatar

Ep 148

Let's talk dynamic disability.

Vlad Vexler:
From: https://twitter.com/vladvexler/status/1453428887548047367

If people know of any of Vlad's other social media channels where he talks about ME, etc., please let me know.

I know he has a very popular YouTube channel on Russian politics but that's not particularly relevant for those who might be interested in this video.

@mecfs @longcovid @chronicillness
@spoonies
@disability

video/mp4

tomkindlon, to disability
@tomkindlon@disabled.social avatar
tomkindlon, to disability
@tomkindlon@disabled.social avatar

Disability At Home:
"This website documents the ingenuity and creativity that caregivers and disabled people, including those with chronic illnesses, use every day to make home accessible..."

https://www.disabilityathome.org/

@chronicillness
@spoonies
@disability @mecfs

tomkindlon,
@tomkindlon@disabled.social avatar
tomkindlon, to disability
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

3/

"My doctor signed it without question. I still was not comfortable with the term “disabled” then and I was still trying to pretend I could physically do what I was longer able to do. “Passing” as able-bodied was significantly easier than trying to live with disability (or so I thought at the time), and I was coasting on denial as long as I could."

@chronicillness @spoonies @disability @mecfs @longcovid



tomkindlon,
@tomkindlon@disabled.social avatar

4/

"But I was wrong. I was and am disabled. I got the [parking] placard and ended up using it every day because it was a life saver. I wished I had gotten it sooner when I needed it, long before I finally talked to my doctor about it."


@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon,
@tomkindlon@disabled.social avatar

9/

"4. If someone would like to help those with #disabilities, there are better ways to do this than by leaving notes on someone’s car or making disdainful comments... You can spread the word that many disabilities are invisible and learn more about why disability and illness are often considered “invisible.”..."

#chronicillness #Spoonie #Hiddendisabilities #Invisibledisability

@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon,
@tomkindlon@disabled.social avatar

10/

"Those with face hurdles every day the able-bodied cannot fathom. If you are concerned that the are getting a “privilege” that is somehow “undeserved,” you are entitled to your opinion but please don’t act on it."


@chronicillness @spoonies @disability @mecfs @longcovid

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