Simone
@phoenixme.bsky.social
Bed-bound activist with severe ME/CFS.
ME/CFS, chronic illness, #AusPol, #USPol, climate justice, social justice, crochet, cats, sci fi. Views expressed are my own.
If I had any spoons, I'd be dangerous.
Boonwurrung country, Australia
ME/CFS, chronic illness, #AusPol, #USPol, climate justice, social justice, crochet, cats, sci fi. Views expressed are my own.
If I had any spoons, I'd be dangerous.
Boonwurrung country, Australia
Soon the development of new clinical guidelines for #mecfs in Australia will start. I will wear this Erstwilder brooch, called That’s Witchcraft, to every meeting (attached to my PJs!), to remind myself that what we are creating is something magical and precious for our community.
August 28, 2025 at 5:11 AM
Soon the development of new clinical guidelines for #mecfs in Australia will start. I will wear this Erstwilder brooch, called That’s Witchcraft, to every meeting (attached to my PJs!), to remind myself that what we are creating is something magical and precious for our community.
Highly recommend @emmashortis.bsky.social’s issue of @australiainstitute.org.au’s publication Vantage Point: After America - Australia & the New World Order.
Excellent, insightful analysis, like this on the AUKUS deal, which (if the subs are delivered) won’t be complete until the mid-2060s. #AusPol
Excellent, insightful analysis, like this on the AUKUS deal, which (if the subs are delivered) won’t be complete until the mid-2060s. #AusPol
August 17, 2025 at 2:39 AM
Highly recommend @emmashortis.bsky.social’s issue of @australiainstitute.org.au’s publication Vantage Point: After America - Australia & the New World Order.
Excellent, insightful analysis, like this on the AUKUS deal, which (if the subs are delivered) won’t be complete until the mid-2060s. #AusPol
Excellent, insightful analysis, like this on the AUKUS deal, which (if the subs are delivered) won’t be complete until the mid-2060s. #AusPol
Welcome to Schrödinger’s Facebook, in which an appeal can be both lodged and not lodged at the same time.
Being bedbound with chronic illness, much of my life is on FB, and Meta has disconnected me from it without warning or any real process for getting it back. #mecfs #Disability
Being bedbound with chronic illness, much of my life is on FB, and Meta has disconnected me from it without warning or any real process for getting it back. #mecfs #Disability
August 10, 2025 at 12:24 AM
Welcome to Schrödinger’s Facebook, in which an appeal can be both lodged and not lodged at the same time.
Being bedbound with chronic illness, much of my life is on FB, and Meta has disconnected me from it without warning or any real process for getting it back. #mecfs #Disability
Being bedbound with chronic illness, much of my life is on FB, and Meta has disconnected me from it without warning or any real process for getting it back. #mecfs #Disability
A recently finished project, bringing two loves together: crochet and #DoctorWho. Made this for a friend whose favourite is the 13th Doctor. This was a fabulous pattern, with lots of lovely details! 🧶
July 29, 2025 at 4:57 AM
A recently finished project, bringing two loves together: crochet and #DoctorWho. Made this for a friend whose favourite is the 13th Doctor. This was a fabulous pattern, with lots of lovely details! 🧶
I call this blanket Frosty Starbright. I used Attic24’s Starbright pattern and her Springfrost yarn pack. Love how it turned out. My new lap blanket for cold nights in front of the telly!
#crochet #crochetsky #craft 🧶
#crochet #crochetsky #craft 🧶
May 5, 2025 at 1:54 PM
I call this blanket Frosty Starbright. I used Attic24’s Starbright pattern and her Springfrost yarn pack. Love how it turned out. My new lap blanket for cold nights in front of the telly!
#crochet #crochetsky #craft 🧶
#crochet #crochetsky #craft 🧶
A labour of love. A set of Mondrian-inspired crochet coasters for a Dutch friend who recently renovated her apartment. Her decor is influenced by Mondrian’s art, so I wanted to make these to match.
This was my own pattern, and made using Scheepjes Catona 4ply cotton yarn. 🧶
This was my own pattern, and made using Scheepjes Catona 4ply cotton yarn. 🧶
April 23, 2025 at 12:04 PM
A labour of love. A set of Mondrian-inspired crochet coasters for a Dutch friend who recently renovated her apartment. Her decor is influenced by Mondrian’s art, so I wanted to make these to match.
This was my own pattern, and made using Scheepjes Catona 4ply cotton yarn. 🧶
This was my own pattern, and made using Scheepjes Catona 4ply cotton yarn. 🧶
Yesterday, I was bored.
Feeling bored means I’m not feeling as crap anymore, but I’m not well enough to do much. It means I’m coming out of a bad period. It’s also a warning sign that I’m not out of it yet.
But yesterday, I didn’t listen to the boredom and did too much 🙄
#mecfs #ChronicIllness
Feeling bored means I’m not feeling as crap anymore, but I’m not well enough to do much. It means I’m coming out of a bad period. It’s also a warning sign that I’m not out of it yet.
But yesterday, I didn’t listen to the boredom and did too much 🙄
#mecfs #ChronicIllness
March 3, 2025 at 9:23 PM
Yesterday, I was bored.
Feeling bored means I’m not feeling as crap anymore, but I’m not well enough to do much. It means I’m coming out of a bad period. It’s also a warning sign that I’m not out of it yet.
But yesterday, I didn’t listen to the boredom and did too much 🙄
#mecfs #ChronicIllness
Feeling bored means I’m not feeling as crap anymore, but I’m not well enough to do much. It means I’m coming out of a bad period. It’s also a warning sign that I’m not out of it yet.
But yesterday, I didn’t listen to the boredom and did too much 🙄
#mecfs #ChronicIllness
To my fellow #Spoonies,
Merry Christmas, and May the Spoons be Ever in your Favour 🎄💗
Much love to you all, whether you’re trying to make your spoons last the day or you’re on your own 💕
#mecfs #longCOVID #ChronicIllness #Disability
Merry Christmas, and May the Spoons be Ever in your Favour 🎄💗
Much love to you all, whether you’re trying to make your spoons last the day or you’re on your own 💕
#mecfs #longCOVID #ChronicIllness #Disability
December 25, 2024 at 2:37 AM
To my fellow #Spoonies,
Merry Christmas, and May the Spoons be Ever in your Favour 🎄💗
Much love to you all, whether you’re trying to make your spoons last the day or you’re on your own 💕
#mecfs #longCOVID #ChronicIllness #Disability
Merry Christmas, and May the Spoons be Ever in your Favour 🎄💗
Much love to you all, whether you’re trying to make your spoons last the day or you’re on your own 💕
#mecfs #longCOVID #ChronicIllness #Disability
Calling fellow MEeps!
Emerge Australia, the national patient organisation for #mecfs and #longCOVID in Australia, recently joined Bsky, but the account is looking a bit sad with only 14 followers.
Help me out by following the account! TIA!
https://bsky.app/profile/emergeaustralia.bsky.social
Emerge Australia, the national patient organisation for #mecfs and #longCOVID in Australia, recently joined Bsky, but the account is looking a bit sad with only 14 followers.
Help me out by following the account! TIA!
https://bsky.app/profile/emergeaustralia.bsky.social
December 21, 2024 at 1:48 AM
Calling fellow MEeps!
Emerge Australia, the national patient organisation for #mecfs and #longCOVID in Australia, recently joined Bsky, but the account is looking a bit sad with only 14 followers.
Help me out by following the account! TIA!
https://bsky.app/profile/emergeaustralia.bsky.social
Emerge Australia, the national patient organisation for #mecfs and #longCOVID in Australia, recently joined Bsky, but the account is looking a bit sad with only 14 followers.
Help me out by following the account! TIA!
https://bsky.app/profile/emergeaustralia.bsky.social
These shelves on bedside tables should be called Cat Shelves
December 8, 2024 at 2:32 AM
These shelves on bedside tables should be called Cat Shelves
Happy Caturday and a reminder to take sleep in whatever position you can get it!
December 7, 2024 at 3:08 AM
Happy Caturday and a reminder to take sleep in whatever position you can get it!
Artist @glenmartintaylor.bsky.social’s approach to traditional Japanese #art of Kintsugi is powerful. He describes it as “ugly human”. He joins fractured ceramics with barbed wire, rusty scissors, and other objects, to reflect his own emotions. “Not all that beautiful perfect bullshit”.
December 1, 2024 at 10:17 PM
Artist @glenmartintaylor.bsky.social’s approach to traditional Japanese #art of Kintsugi is powerful. He describes it as “ugly human”. He joins fractured ceramics with barbed wire, rusty scissors, and other objects, to reflect his own emotions. “Not all that beautiful perfect bullshit”.
This is a quote I’ve come back to time and again in my life, especially each time, like today, #mecfs, #ChronicIllness & #disability take another piece from me.
Even though it feels like things are falling apart right now, they will come back together. I will come back together, and so will you. 💗
Even though it feels like things are falling apart right now, they will come back together. I will come back together, and so will you. 💗
December 1, 2024 at 7:18 AM
This is a quote I’ve come back to time and again in my life, especially each time, like today, #mecfs, #ChronicIllness & #disability take another piece from me.
Even though it feels like things are falling apart right now, they will come back together. I will come back together, and so will you. 💗
Even though it feels like things are falling apart right now, they will come back together. I will come back together, and so will you. 💗
Anyone else enjoying Headliners? I’ve only watched the first episode so far, but loving that it’s raising the profile of musicians with #disability & the obstacles they face. Clearly a wealth of talent out there.
December 1, 2024 at 2:06 AM
Anyone else enjoying Headliners? I’ve only watched the first episode so far, but loving that it’s raising the profile of musicians with #disability & the obstacles they face. Clearly a wealth of talent out there.
Letting go of another piece of myself…
Before I had #mecfs, I worked as a psychologist for 13 years. I’ve been unable to work in the field for the past 10 years, but I held onto my registration.
It’s time to let it go.
🧵
Before I had #mecfs, I worked as a psychologist for 13 years. I’ve been unable to work in the field for the past 10 years, but I held onto my registration.
It’s time to let it go.
🧵
November 26, 2024 at 11:23 PM
Letting go of another piece of myself…
Before I had #mecfs, I worked as a psychologist for 13 years. I’ve been unable to work in the field for the past 10 years, but I held onto my registration.
It’s time to let it go.
🧵
Before I had #mecfs, I worked as a psychologist for 13 years. I’ve been unable to work in the field for the past 10 years, but I held onto my registration.
It’s time to let it go.
🧵
Congratulations to @cathywilcox.bsky.social for winning the Walkley Award for Cartoon of the Year for “Break Glass”.
Political cartoonists are so vital right now, and Cathy is world class. A well-deserved win. #AusPol
Political cartoonists are so vital right now, and Cathy is world class. A well-deserved win. #AusPol
November 19, 2024 at 11:09 AM
Congratulations to @cathywilcox.bsky.social for winning the Walkley Award for Cartoon of the Year for “Break Glass”.
Political cartoonists are so vital right now, and Cathy is world class. A well-deserved win. #AusPol
Political cartoonists are so vital right now, and Cathy is world class. A well-deserved win. #AusPol
Aussies with #mecfs!
If you missed the Parliamentary Friends of ME/CFS meeting in Canberra yesterday, an audio recording and photos from the event are now available on Emerge Australia’s website.
https://www.emerge.org.au/parliamentary-friends-for-me-cfs/
If you missed the Parliamentary Friends of ME/CFS meeting in Canberra yesterday, an audio recording and photos from the event are now available on Emerge Australia’s website.
https://www.emerge.org.au/parliamentary-friends-for-me-cfs/
November 19, 2024 at 9:56 AM
Aussies with #mecfs!
If you missed the Parliamentary Friends of ME/CFS meeting in Canberra yesterday, an audio recording and photos from the event are now available on Emerge Australia’s website.
https://www.emerge.org.au/parliamentary-friends-for-me-cfs/
If you missed the Parliamentary Friends of ME/CFS meeting in Canberra yesterday, an audio recording and photos from the event are now available on Emerge Australia’s website.
https://www.emerge.org.au/parliamentary-friends-for-me-cfs/
Carla, who leads ME Advocacy Network Australia, is speaking about the challenges for people with #mecfs for accessing the NDIS, especially those who have no support to help them.She also spoke about Foundational Supports, need to provide the right support to maintain dignity and privilege of a life.
November 18, 2024 at 1:31 AM
Carla, who leads ME Advocacy Network Australia, is speaking about the challenges for people with #mecfs for accessing the NDIS, especially those who have no support to help them.She also spoke about Foundational Supports, need to provide the right support to maintain dignity and privilege of a life.
Penelope McMillan, patient advocate from ME/CFS Aus, speaking about Medicare review of chronic illness items. In Australia, just 5 sessions are covered by Medicare. Penelope compares this to UK’s system, and how inadequate the current Medicare chronic illness items are.
November 18, 2024 at 1:25 AM
Penelope McMillan, patient advocate from ME/CFS Aus, speaking about Medicare review of chronic illness items. In Australia, just 5 sessions are covered by Medicare. Penelope compares this to UK’s system, and how inadequate the current Medicare chronic illness items are.
Nicola: “Turned off the lights of my life. Three years of indescribable suffering. It’s taken everything from me except my breath and the love I have from my family.
November 18, 2024 at 1:09 AM
Nicola: “Turned off the lights of my life. Three years of indescribable suffering. It’s taken everything from me except my breath and the love I have from my family.
Bruce talking about his daughter, Nicola. “There’s hope that things would improve in the future, but there’s no timeline”. Said there’s very few doctors who understand #mecfs. Not their fault, but people need to find out, not make assumptions.
November 18, 2024 at 1:07 AM
Bruce talking about his daughter, Nicola. “There’s hope that things would improve in the future, but there’s no timeline”. Said there’s very few doctors who understand #mecfs. Not their fault, but people need to find out, not make assumptions.