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tomkindlon , to disability
@tomkindlon@disabled.social avatar

Ancient Greek word of the day: κακοθερής (kakotherēs), unsuited to endure summer heat (literally, bad at summer).

My thoughts are with those with conditions such as ME for which this is relevant.

Hashtags:
@longcovid
@chronicillness
@spoonies
@disability
@mecfs

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

Looking to support a fellow Autist whilst navigating your own ASD journey?

I invite you to follow my Autistic Diaries Blog!

I share insight on my own personal experiences as a Chronically ill Autistic person. My life, my diagnosis, and some information about Autism and my chronic illnesses (Coeliac and Graves', as well as POTS, and other conditions)

https://buymeacoffee.com/addriannawa/welcome-my-autistic-diaries-blog

@actuallyautistic

AceyAngel OP ,
@AceyAngel@disabled.social avatar

New post for potential supporters is now live!

"Chronic Illness After Covid"

A little rant about what it's been like recovering from Long Covid, as well as having been chronically ill prior to the Pandemic.

https://buymeacoffee.com/addriannawa/chronic-illness-after-covid

@actuallyautistic

tomkindlon , to disabilityjustice
@tomkindlon@disabled.social avatar

UK Government Open Consultation
“Modernising support for independent living: the health & disability green paper”

Article with links
https://www.gov.uk/government/consultations/modernising-support-for-independent-living-the-health-and-disability-green-paper

The government has published a series of documents including a Green paper & evidence pack

@disability @disabilityjustice
@chronicillness @spoonies

1/

halcionandon , to disabilityjustice
@halcionandon@aus.social avatar

Please and share to other platforms.

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.

https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/

I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an ? I need help.

@covid19 @mecfs @chronicillness @auscovid19 @neisvoid @disability @disabilityjustice @socialwork
@dysautonomia
@dysclinic
@mutualaid

halcionandon , to disabilityjustice
@halcionandon@aus.social avatar

If you are able and would like help me escape abuse and pay for all the necessary services, I have a crowdfund at: https://www.buymeacoffee.com/ halcionandon

People with Australian bank accounts can use https://www.beem.com.au and pay to @halcionandon. It is fee free and anonymous both ends (so Visa, Mastercard and the platform charge no fees for me unlike Buy Me a Coffee)

I’m also registered at https://www.Prezzee.com.au for e-gift cards which help keep govt out of my finances. Any digital gift card for use in Australia is very appreciated. There’s plenty out there if Prezzee is not your thing. Universal or Amazon cards are best.

People help is also more than welcome - I need a place to stay, an advocate, social worker etc too. There are barely any resources allocated to my catchment area so I’m pretty much on my own. Have been trying almost 2 years to get an advocate!

Albanese’s Escaping Violence package shows no signs of including the and people with so we’re still on our own. Yes the government forgot to ‘forgot’ to include us. Current DV and family violence services won’t help us. I’ve tried them all.

Ask questions if you’re interested or need clarification. I’ve posted a lot too.

Help not expected but highly appreciated. 💜

@disabilityjustice
@chronicillness
@neisvoid
@mutualaid
@MutualAidVisibility
@auscovid19

halcionandon , to disabilityjustice
@halcionandon@aus.social avatar

Can people PLEASE help me contact / /places of worship/ community groups & ask if they can help me find somewhere to live? If one can’t then they are affiliated with others that might and can ask people in their congregation. Put a plea on their message board irl or Facebook/ whatever online presence they have.

I am living with abuse /neglect and can’t do this anymore.

You don’t have to be in . Search for help in area. Search the . Anywhere.

Ask your place of if you have one.🙏

None of the orgs I‘ve been referred to help people with or
(Orange Door, Safe Steps I’ve tried them all.)

Please help.

@multipledisabilities @disabilityjustice
@socialwork
@mecfs
@mutualaid
@WythenshaweMethodists

halcionandon , to disability
@halcionandon@disabled.social avatar

Can people PLEASE help me contact / /places of worship/ community groups & ask if they can help me find somewhere to live.

Don’t have to be in . Search for help in area. Search the . Anywhere.

Ask your place of if you have one.🙏

None of the orgs I‘ve been referred to help people with or
(Orange Door, Safe Steps I’ve tried them all.)

I cannot live like this anymore.

@chronicillness @mutualaid
@disability

halcionandon , to disabilityjustice
@halcionandon@disabled.social avatar
halcionandon , to disabilityjustice
@halcionandon@aus.social avatar
halcionandon , to disabilityjustice
@halcionandon@aus.social avatar
scrappedbadnik , to random
@scrappedbadnik@cooltrans.men avatar

I can't bind because of chronic pain, and trans tape isn't holding my tits because it's heavy, I can't do surgery either because it takes more than morphine for me to not suffer, what should I do? I'm lost.

18+ Anxious_Agender , to random
@Anxious_Agender@cooltrans.men avatar
tomkindlon , to disability
@tomkindlon@disabled.social avatar
AceyAngel , to random
@AceyAngel@disabled.social avatar

I think as well as sharing my Autistic experiences I'm going to also try and share information about my combination of chronic diseases and what it does to an individual's body over time... It seems many people I am close to have never even heard much about Celiac's or especially Graves' disease...

starsnspoons , to random
@starsnspoons@mastodon.social avatar

Are intros a thing here 😅? Hi, I’m Leo (pronouns they/them/their)! I’m half Indian, nonbinary, etc. I don’t like writing bios 🤣. In the process of getting off the Meta apps, and hoping to find people here to connect with (my world is pretty small since covid)
I’m interested in connecting with other , , , , cautious folks!
Throwing some #’s out there:

tomkindlon , to disability
@tomkindlon@disabled.social avatar

Got my postal vote for upcoming referendums in Ireland, so I thought I would remind people of this option for future votes (it's too late for the referendums).

More Irish info here:
https://www.citizensinformation.ie/en/government-in-ireland/elections-and-referenda/voting/registering-to-vote/#512d79

Other countries have their own systems

@chronicillness
@spoonies
@disability











tomkindlon , to disability
@tomkindlon@disabled.social avatar
GabeMoralesVR , to random
@GabeMoralesVR@mastodon.gamedev.place avatar

has anybody ever received a where the told you that your illness will likely cause a significant reduction in your ? Not that you are dying, but that you likely will not live to be an old person? How did you deal with this news? How do you handle that?

adminkirsty ,
@adminkirsty@infosec.exchange avatar

@zachnfine @GabeMoralesVR
Ditto. Boost re ⬆️🔺
Also try tagging @chronicillness @disability

tomkindlon , to disability
@tomkindlon@disabled.social avatar

Patient experiences with requests for medical assistance in dying

Free full text:
https://www.cfp.ca/content/70/1/41

"To explore experiences of patients who have complex chronic conditions, such as & , when they request medical assistance in dying () in Canada"

@chronicillness
@spoonies
@disability









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

Navigating Ambiguous Loss in Caregiving

https://www.caregiverwisdom.net/post/navigating-ambiguous-loss-in-chronic-illness-caregiving

The author, Kim Moy, set up the @MEActNet ME Partner Caregivers Support Group

@caregivers
@chronicillness
@spoonies
@disability

tomkindlon , to disability
@tomkindlon@disabled.social avatar

Got my mobility scooter bus pass today. 😀

My scooter doesn’t have a tight turning circle so using it on a bus is a lot harder than my powered wheelchair but after my lesson today I feel confident enough using it on buses 😀

More in #2

@mecfs @longcovid
@chronicillness
@spoonies
@disability




tomkindlon OP ,
@tomkindlon@disabled.social avatar

2/

The image includes background information including information on the free lessons I have been getting training to get on and off buses.

Links in image
https://www.dublinbus.ie/accessibility/travel-assistance-scheme
https://www.buseireann.ie/inner.php?id=757


@mecfs @longcovid @chronicillness @spoonies @disability

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