Well, not the happiest intro but I’ll cut/paste this here while I still remember then add a proper intro spoons allowing..

Please #boost and share to other platforms spoons allowing.

Seems I’m desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.

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

More info on how to help:: https://buymeacoffee.com/halcionandon/
Beem: Halcionandon

I’ve tried every level of government and they simply won’t help.
- Please ask people if they have a spare room or somewhere to go. Maybe you have somewhere?
- Is anybody a #DisabilityAdvocate? #SocialWorker? Need help.

Please don’t give me contacts for domestic violence orgs. They don’t help disabled people with housing & only offer counselling. Also, that list of disability advocates going around for #Melbourne #Australia (where I am) is outdated - there aren’t any in my catchment. So I’m looking for volunteers with some background.

Thanks for reading

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #NacissisticAbuse ##Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press

@mecfs @chronicillness @neisvoid
@disability @disabilityjustice @socialwork @mutualaid
@chronicillness

Me every month: oh cool, I think this month my sciatica isn’t as bad, maybe the birth control is finally helping.
Also me every month the next day: FUCK, never mind!
#NEISvoid #ChronicPain

Oh, summer energy level, I love you! #NEISvoid

I actually managed a short road-trip yesterday with a few thousand steps of sightseeing, and still had enough energy today to do a fair amount of tidying and small projects around the house. Hooray for feeling a sense of accomplishment and having removed several small metaphorical pebbles from my shoes!

A protest guide from #MEAction for folks with ME/CFS, Long Covid, and other chronic illnesses that cause limited energy:

https://www.meactions.org/_files/ugd/b5886a_67f8935af3594508b1a7bcd86e6b7c58.pdf

"We hope this guide can help activism become more intersectional and enable those attending events to do so as safely as possible."

@mecfs @longcovid

This week’s game is apparently “how many of my chronic issues can flare up simultaneously?”
0/10, lots of notes.
#NEISvoid #ChronicIllness #ChronicPain

Medscape (widely read by health professionals):

‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms

https://www.medscape.com/viewarticle/symptom-invalidation-clinically-uncertain-diagnoses-can-2025a1000ewd
(may require free registration)

Thought this was good & interesting.

@chronicillness
@spoonies
#lupus @lupus #neisvoid
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses
#Spoonies #ChronicallyIll
#POTS @pots #IBS @ibs fibromyalgia@a.gup.pe
#Fibromyalgia #Fibro #FMS @longcovid #LongCovid @mecfs #MEcfs
1/

I haven't read the book but the blog post is interesting enough itself

https://meglobalchronicle.wordpress.com/2023/12/23/the-words-that-saved-me/

"It is about my experiences and the emotional journey of finding hope and courage whilst living with severe chronic illness."

Hashtags:
@chronicillness
@spoonies
@disability
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME

Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds

https://www.eurekalert.org/news-releases/1074887

Image is a screenshot from June 2025 AMMES e-newsletter

@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

News release 04 June 2025:

"Groundbreaking discovery of 'new' pain target brings hope for those with chronic pain"
https://www.abdn.ac.uk/news/24440/

Link to associated research paper:
https://www.science.org/doi/10.1126/sciadv.abc5219

#pain #ChronicPain @chronicpain @chronicillness #neisvoid
#chronicillness
#chroniclife

"One Red Leaf at a Time: an international art project"

https://theredtreeandme.substack.com/p/one-red-leaf-at-a-time-an-international

"The Red Leaf Creative Collaborative is excited to launch One Red Leaf at a Time: an international art project."

To contribute a creative expression on the theme of ‘One Red Leaf at a Time’ please register your interest at this link:
https://bit.ly/OneRedLeafArt

If you don't have a google account then send email to jo@theredtreeandme.com

@mecfs

Is anybody able to recommend a good, free app to go with a heart rate monitor for android?

One that pairs with an actual device, not one that uses my phone's camera.

I expected this one to come with an app, but it didn't, and every other app I can find is only willing to give me a few days free trial before charging me way too much.

Preferably not an exercise focused app, too. I'm not exercising, I'm just trying to be alive.

EDIT:

Nevermind. I'm returning the monitor.

EDIT 2:

Just in case anybody stumbles across this and would also like to know, I got pointed toward GadgetBridge, an app downloaded through f-droid, which helps access a lot of the functionality of smart devices without the need to sign up to a paid or data-harvesting service.

Check that for compatible devices, and from there, it is relatively simple to pair the device ^_^

Got hit with the physical therapy insurance paradox. Need to keep going to PT to keep & increase improvement, but improvement leads to insurance declaring it "medically unnecessary", & lack of improvement as "medically worthless". I've been deemed medically unnecessary today #disability #NEISvoid

Here's how much one year (12 doses) of *one* of my medications costs in the US.