#chroniclife — Public Fediverse posts

@Aphelion
Checks out. ME/CFS has made me into someone completely different.

#MEcfs #PwME #ChronicLife

@Aphelion
Checks out. ME/CFS has made me into someone completely different.

#MEcfs #PwME #ChronicLife

Short blog post: "The Legacy of Florence Nightingale and Chronic Illness"

https://sahanasa.wordpress.com/2026/06/16/the-legacy-of-florence-nightingale-and-chronic-illness/

Headings:
-The Crash After the Front Lines
-Aggressive Pacing in the 19th Century
-Her Story Gives Us Strength

#MEcfs #PwME #ME #MyalgicE
@mecfs #chronicillness #chroniclife #Spoonielife

Short blog post: "The Legacy of Florence Nightingale and Chronic Illness"

https://sahanasa.wordpress.com/2026/06/16/the-legacy-of-florence-nightingale-and-chronic-illness/

Headings:
-The Crash After the Front Lines
-Aggressive Pacing in the 19th Century
-Her Story Gives Us Strength

#MEcfs #PwME #ME #MyalgicE
@mecfs #chronicillness #chroniclife #Spoonielife

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

Worauf einen als chronisch Kranke niemand vorbereitet, ist diese gottlose Einsamkeit wenn man zu diversen Einladungen nicht kommen kann weil zu viele Leute, zu viele Kinder, zu laut, zu ermüdend und kein wirklicher Rückzugsort möglich, während der Partner wegen einem natürlich nicht verzichten soll und darum hingeht, und dann hockt man halt vor allem an Feiertagen alleine zuhause und denkt sich „Ja danke Körper“.
#chroniclife #chronischkrank

Years of scapegoating rhetoric has led to ‘envy & resentment’ of those with blue badges, research finds

Note: blue badge = UK name for disabled parking permit

https://www.disabilitynewsservice.com/years-of-scapegoating-rhetoric-has-led-to-envy-and-resentment-of-those-with-blue-badges-research-finds/

Screenshot from AMMES March 2026 Newsletter

#Disabled #Disability #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots

Years of scapegoating rhetoric has led to ‘envy & resentment’ of those with blue badges, research finds

Note: blue badge = UK name for disabled parking permit

https://www.disabilitynewsservice.com/years-of-scapegoating-rhetoric-has-led-to-envy-and-resentment-of-those-with-blue-badges-research-finds/

Screenshot from AMMES March 2026 Newsletter

#Disabled #Disability #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots

"Rather than holding onto the idea that the only life worth living is one without disease, consider expanding your definition of hope to include connection, purpose, & meaning under any circumstances"

From:
Recap: Support group: Coping with Depression & Emotional Overload
https://batemanhornecenter.org/wp-content/uploads/2026/02/20260217-Support-Group-Recap.pdf

#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

"Rather than holding onto the idea that the only life worth living is one without disease, consider expanding your definition of hope to include connection, purpose, & meaning under any circumstances"

From:
Recap: Support group: Coping with Depression & Emotional Overload
https://batemanhornecenter.org/wp-content/uploads/2026/02/20260217-Support-Group-Recap.pdf

#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

🧵
"The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

https://onelifelivedwell.substack.com/p/the-quiet-art-of-extending-a-life

Another thoughtful post from this OT who specialises in ME/CFS & long Covid

She calls such devices "capacity extenders".

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots
#Disabled
#Disability

1/

🧵
"The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

https://onelifelivedwell.substack.com/p/the-quiet-art-of-extending-a-life

Another thoughtful post from this OT who specialises in ME/CFS & long Covid

She calls such devices "capacity extenders".

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots
#Disabled
#Disability

1/

🧵
Another thoughtful blog post from this blogger:

"Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong). It’s complicated!" by K. Johnstone

https://mecfs.substack.com/p/some-people-feel-validated-by-an

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

1/

🧵
Another thoughtful blog post from this blogger:

"Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong). It’s complicated!" by K. Johnstone

https://mecfs.substack.com/p/some-people-feel-validated-by-an

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

1/

🧵
"Somatic symptom disorder: Why your doctor doesn't believe you're really sick: SSD is a mainly-female condition which medicine treats as real and common, but which has no solid scientific basis"

https://mecfs.substack.com/p/somatic-symptom-disorder-why-your

I have been impressed by this blogger.

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

1/

🧵
"Somatic symptom disorder: Why your doctor doesn't believe you're really sick: SSD is a mainly-female condition which medicine treats as real and common, but which has no solid scientific basis"

https://mecfs.substack.com/p/somatic-symptom-disorder-why-your

I have been impressed by this blogger.

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

1/

@the I agree, it's like when I refer to myself as an invertebrate (as my spine has more damaged disks than intact & fully functional ones by a factor of at least 2 to 1) and yes I've been told to "stop that", when it's a pretty close to reality of a joke.

I'm not harming anyone in this & it's tiresome to get others trying to micromanage my choice in terms used for my medical conditions.
#ChronicLife #SpinalStenosis #DegenerativeDiskDisease #Spondylitis

@the I agree, it's like when I refer to myself as an invertebrate (as my spine has more damaged disks than intact & fully functional ones by a factor of at least 2 to 1) and yes I've been told to "stop that", when it's a pretty close to reality of a joke.

I'm not harming anyone in this & it's tiresome to get others trying to micromanage my choice in terms used for my medical conditions.
#ChronicLife #SpinalStenosis #DegenerativeDiskDisease #Spondylitis

The Emotional Toll of Chronic Illness: Naming the Invisible Grief | Grief is the New Normal

https://www.youtube.com/watch?v=pgqi2W9dmLc

From February 2026 Massachusetts ME/CFS & FM Association newsletter

https://massme.monkeypod.io/mailcoach/webview/campaign/05601954-e0f2-44eb-af44-5aca96c2b253

Comment: I haven't watched it myself so far

#chronicillness #chroniclife #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #Fibromyalgia #Fibro #FMS #FM

The Emotional Toll of Chronic Illness: Naming the Invisible Grief | Grief is the New Normal

https://www.youtube.com/watch?v=pgqi2W9dmLc

From February 2026 Massachusetts ME/CFS & FM Association newsletter

https://massme.monkeypod.io/mailcoach/webview/campaign/05601954-e0f2-44eb-af44-5aca96c2b253

Comment: I haven't watched it myself so far

#chronicillness #chroniclife #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #Fibromyalgia #Fibro #FMS #FM

How can we manage our wellbeing when interacting with others online?

https://www.actionforme.org.uk/resource/behind-the-screen/

"In this article, we start a conversation about life online, with some reflections on how to manage our wellbeing in this environment."

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #LongCovid #chronicillness @mecfs #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

How can we manage our wellbeing when interacting with others online?

https://www.actionforme.org.uk/resource/behind-the-screen/

"In this article, we start a conversation about life online, with some reflections on how to manage our wellbeing in this environment."

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #LongCovid #chronicillness @mecfs #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

A topic of interest to some in #chronicillness community who could benefit from home visits

News Release
Primary care home visits for older adults declined after payment policy changes & COVID-19 in Ontario
https://www.eurekalert.org/news-releases/1114111

https://www.annfammed.org/content/24/1/44

#Homebound #Housebound #SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

A topic of interest to some in #chronicillness community who could benefit from home visits

News Release
Primary care home visits for older adults declined after payment policy changes & COVID-19 in Ontario
https://www.eurekalert.org/news-releases/1114111

https://www.annfammed.org/content/24/1/44

#Homebound #Housebound #SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

2/

- ‘I would be there if I could’ – Alison Larkman’s Mirrorbox project

- Moving Mountains, edited by Louise Kenward

- Crafting a Path Through Illness – by Germaine Hypher

#chroniclife #PwME
@mecfs

2/

- ‘I would be there if I could’ – Alison Larkman’s Mirrorbox project

- Moving Mountains, edited by Louise Kenward

- Crafting a Path Through Illness – by Germaine Hypher

#chroniclife #PwME
@mecfs

"Creativity and chronic illness" (from the Chronic Living Therapy newsletter)
https://chroniclivingtherapy.com/creativity-chronic-illness/

Features:

- Ballet dancer, @anilvanderzee

- Red Tree and ME – international collaborative art project

- Jeremy Jeffs, Photography project

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #TheRedTreeandME

1/

"Creativity and chronic illness" (from the Chronic Living Therapy newsletter)
https://chroniclivingtherapy.com/creativity-chronic-illness/

Features:

- Ballet dancer, @anilvanderzee

- Red Tree and ME – international collaborative art project

- Jeremy Jeffs, Photography project

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #TheRedTreeandME

1/

I saw this 36-page booklet recommended for people with disabilities & chronic illnesses as well as older people but haven't read.

https://www.aarp.org/livable-communities/housing/info-2020/homefit-guide-download.html

Not sure whether it is mainly of use to those in the US or whether it is pretty international?

#Disabled #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disability

1/

I saw this 36-page booklet recommended for people with disabilities & chronic illnesses as well as older people but haven't read.

https://www.aarp.org/livable-communities/housing/info-2020/homefit-guide-download.html

Not sure whether it is mainly of use to those in the US or whether it is pretty international?

#Disabled #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disability

1/

(Not ME-specific)

"Cost-of-disability payment a priority for 2026, says social protection minister"

"Dara Calleary said he wanted to see a budget proposal provided to him before the summer"

https://www.irishexaminer.com/news/politics/arid-41767685.html

#Disabled
#Disability
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

(Not ME-specific)

"Cost-of-disability payment a priority for 2026, says social protection minister"

"Dara Calleary said he wanted to see a budget proposal provided to him before the summer"

https://www.irishexaminer.com/news/politics/arid-41767685.html

#Disabled
#Disability
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Bateman Horne Center's "'Coffee'" with a Clinician: Pacing for Holidays and Special Events"

Recording
https://www.youtube.com/watch?v=BNZ563Uktaw

Slides
https://batemanhornecenter.org/wp-content/uploads/2025/12/Coffee-With-a-Clinician-Pacing-for-Holidays-and-Special-Events.pdf

Transcript
https://batemanhornecenter.org/wp-content/uploads/2025/12/CWC-Dec-10-Transcript-edit.pdf

I haven't watched it but slides seem sensible

#LongCovid @longcovid @mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS @pots #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Bateman Horne Center's "'Coffee'" with a Clinician: Pacing for Holidays and Special Events"

Recording
https://www.youtube.com/watch?v=BNZ563Uktaw

Slides
https://batemanhornecenter.org/wp-content/uploads/2025/12/Coffee-With-a-Clinician-Pacing-for-Holidays-and-Special-Events.pdf

Transcript
https://batemanhornecenter.org/wp-content/uploads/2025/12/CWC-Dec-10-Transcript-edit.pdf

I haven't watched it but slides seem sensible

#LongCovid @longcovid @mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS @pots #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

See post #2 for a vaguely related comment from me on orthostatic intolerance

#POTS @pots #OI #OrthostaticIntolerance #chronicillness #chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid

1/

See post #2 for a vaguely related comment from me on orthostatic intolerance

#POTS @pots #OI #OrthostaticIntolerance #chronicillness #chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid

1/

#mecfs @mecfs #longcovid @longcovid #pots @pots #chronicillness

#chroniclife

#ChronicPain

#Spoonielife

#hiddenillness

#invisibleillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

#mecfs @mecfs #longcovid @longcovid #pots @pots #chronicillness

#chroniclife

#ChronicPain

#Spoonielife

#hiddenillness

#invisibleillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

#chronicillness

#chroniclife

#ChronicPain

#Spoonielife

#hiddenillness

#invisibleillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

#chronicillness

#chroniclife

#ChronicPain

#Spoonielife

#hiddenillness

#invisibleillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

Opinion piece on the word "journey" as a problematic euphemism for chronic illness.

"Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me."

https://www.statnews.com/2025/11/25/chronic-disease-journey-long-covid/

Screenshot from latest Science for ME weekly update

#LongCovid @longcovid #neisvoid
#chronicillness
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Opinion piece on the word "journey" as a problematic euphemism for chronic illness.

"Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me."

https://www.statnews.com/2025/11/25/chronic-disease-journey-long-covid/

Screenshot from latest Science for ME weekly update

#LongCovid @longcovid #neisvoid
#chronicillness
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#chronicillness #chroniclife #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability #ChronicPain @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs @longcovid
#LongCovid #POTS @pots

#chronicillness #chroniclife #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability #ChronicPain @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs @longcovid
#LongCovid #POTS @pots

Irish Examiner letter from one of our members

She highlights

-difficulty she had in obtaining a payment

-she gets less money because she is means tested both her and her husband's income/assets
(sadly this issue is not specific to Ireland)

https://www.irishexaminer.com/opinion/yourview/arid-41749731.html

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #Disabled
#Disability
#neisvoid
#chronicillness
#chroniclife

Case Report: The intersection of psychiatry and medicine: diagnostic and ethical insights from case studies

https://pubmed.ncbi.nlm.nih.gov/40330647/

Screenshot from November AMMES newsletter

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Case Report: The intersection of psychiatry and medicine: diagnostic and ethical insights from case studies

https://pubmed.ncbi.nlm.nih.gov/40330647/

Screenshot from November AMMES newsletter

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
#Disabled
#Disability

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
#Disabled
#Disability

#mecfs #longcovid #pots @mecfs @longcovid @pots #chronicillness
#chroniclife #Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses
#Spoonies #Spoonie #ChronicallyIll

#mecfs #longcovid #pots @mecfs @longcovid @pots #chronicillness
#chroniclife #Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses
#Spoonies #Spoonie #ChronicallyIll

I saw this posted to a private FB group but I'm not sure who the creator was?

Hashtags:
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #POTS @pots

I saw this posted to a private FB group but I'm not sure who the creator was?

Hashtags:
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #POTS @pots

Find New Meaning
https://cfsselfhelp.org/library/10-find-new-meaning

"In sum, we experience the loss of the person we used to be. The pervasiveness of loss presents us with one of our biggest tasks: finding meaning when so much has been taken from us"

A little bit of what might be called psychobabble near the start but interesting topic

@mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #POTS @pots #chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

Find New Meaning
https://cfsselfhelp.org/library/10-find-new-meaning

"In sum, we experience the loss of the person we used to be. The pervasiveness of loss presents us with one of our biggest tasks: finding meaning when so much has been taken from us"

A little bit of what might be called psychobabble near the start but interesting topic

@mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #POTS @pots #chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

(US)
"Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS & #longCOVID patients must qualify as 'medically frail'" (October 7 2025) by Laurie Jones

https://www.medpagetoday.com/opinion/second-opinions/117839

3 min read

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#PASC #PwLC #postcovid #POTS @pots #postcovid19 #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

(US)
"Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS & #longCOVID patients must qualify as 'medically frail'" (October 7 2025) by Laurie Jones

https://www.medpagetoday.com/opinion/second-opinions/117839

3 min read

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#PASC #PwLC #postcovid #POTS @pots #postcovid19 #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

The last few days have been so frustrating. I've not been in control of my pain levels, my sleep has been worse than normal, I've not been able to settle to anything and each day disappears without any sense of completed something.

I couldn't face large screens earlier due to pain and now it's 11pm, I can, but I'm not up to blog stuff.

I'm going to try and get a decent gaming session in, I think. At least, while the is out of my head.

#chronicpain #chroniclife #Fibromyalgia

The last few days have been so frustrating. I've not been in control of my pain levels, my sleep has been worse than normal, I've not been able to settle to anything and each day disappears without any sense of completed something.

I couldn't face large screens earlier due to pain and now it's 11pm, I can, but I'm not up to blog stuff.

I'm going to try and get a decent gaming session in, I think. At least, while the is out of my head.

#chronicpain #chroniclife #Fibromyalgia