#spoonie — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #spoonie, aggregated by home.social.
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“We are not incompetent. We have an illness. We are NOT our illness. Our job is to find out what we CAN do within our spoons allotment each day and avoid crashes from using too much energy.”
#spoonie #spoonies #spoonie #PEM #PwME #LongCovid
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2/
“We are not incompetent. We have an illness. We are NOT our illness. Our job is to find out what we CAN do within our spoons allotment each day and avoid crashes from using too much energy.”
#spoonie #spoonies #spoonie #PEM #PwME #LongCovid
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2/
“We are not incompetent. We have an illness. We are NOT our illness. Our job is to find out what we CAN do within our spoons allotment each day and avoid crashes from using too much energy.”
#spoonie #spoonies #spoonie #PEM #PwME #LongCovid
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2/
“We are not incompetent. We have an illness. We are NOT our illness. Our job is to find out what we CAN do within our spoons allotment each day and avoid crashes from using too much energy.”
#spoonie #spoonies #spoonie #PEM #PwME #LongCovid
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2/
“We are not incompetent. We have an illness. We are NOT our illness. Our job is to find out what we CAN do within our spoons allotment each day and avoid crashes from using too much energy.”
#spoonie #spoonies #spoonie #PEM #PwME #LongCovid
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So, a little over a month ago, one of my co-workers just quit after her shift without any sort of notice after the other front desk person had left with notice. So now, it’s just my office manager and I covering the desk. It’s been crazy and made worse by the fact I simply can’t catch up on my spoons. I’m rapidly running out of bandwidth to even put on a happy face for customers when I’m so sore and tired. Any advice from any other #spoonie ? How do you deal with something like this?
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RE: https://me.dm/@kshernandez/117205123370324265
If I had misspelled kitties as tiddies, I wonder if anyone would've matched this 35 by now... tiddies.
#mutualaid #directaid #disabled #artist #queer #lgbtq #poverty @[email protected] @[email protected] @disabledvoices @[email protected] @[email protected] @creativearts @povertyandinequality #spoonie #chronicpain #chronicillness @spoonie @queer
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From Canada 🇨🇦
‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications
Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs -
From Canada 🇨🇦
‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications
Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs -
From Canada 🇨🇦
‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications
Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs -
From Canada 🇨🇦
‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications
Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs -
From Canada 🇨🇦
‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications
Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs -
I’m a customer at companies that insist in using their own ‘inbox’. So instead of sending me an email – or a letter – they use only their own website/app.
They still send me emails, though: ‘There’s a new document in your inbox!’
So, every time I have to go there, enter my credentials, and check out what they sent me. Nine out of ten times it’s just bullshit.
Do they have any idea how hard it is for me to find the energy to do that?!
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A great #WhiskersWednesday shot from a favorite #Twitch stream. #CatsofMastodon
I'm hoping these lovely kitties will inspire folks to help me with my #urgent move goal.
Do they? Can you?
All is appreciated!
Deets and ways to aid: https://linktr.ee/khernandez
#mutualaid #directaid #disabled #artist #queer #lgbtq #poverty @[email protected] @[email protected] @disabledvoices @[email protected] @[email protected] @creativearts @povertyandinequality #spoonie #chronicpain #chronicillness @spoonie @queer
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Who can match the 35 received today
A great #WhiskersWednesday shot from a favorite #Twitch stream. #CatsofMastodon
I'm hoping these lovely kitties will inspire folks to help me with my #urgent move goal.
Do they? Can you?
All is appreciated!Deets and ways to aid: https://linktr.ee/khernandez
#mutualaid #directaid #disabled #artist #queer #lgbtq #poverty @[email protected] @[email protected] @disabledvoices @[email protected] @[email protected] @creativearts @povertyandinequality #spoonie #chronicpain #chronicillness @spoonie @queer
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A great #WhiskersWednesday shot from a favorite #Twitch stream. #CatsofMastodon
I'm hoping these lovely kitties will inspire folks to help me with my #urgent move goal.
Do they? Can you?
All is appreciated!
Deets and ways to aid: https://linktr.ee/khernandez
#mutualaid #directaid #disabled #artist #queer #lgbtq #poverty @[email protected] @[email protected] @disabledvoices @[email protected] @[email protected] @creativearts @povertyandinequality #spoonie #chronicpain #chronicillness @spoonie @queer
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A great #WhiskersWednesday shot from a favorite #Twitch stream. #CatsofMastodon
I'm hoping these lovely kitties will inspire folks to help me with my #urgent move goal.
Do they? Can you?
All is appreciated!
Deets and ways to aid: https://linktr.ee/khernandez
#mutualaid #directaid #disabled #artist #queer #lgbtq #poverty @[email protected] @[email protected] @disabledvoices @[email protected] @[email protected] @creativearts @povertyandinequality #spoonie #chronicpain #chronicillness @spoonie @queer
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A great #WhiskersWednesday shot from a favorite #Twitch stream. #CatsofMastodon
I'm hoping these lovely kitties will inspire folks to help me with my #urgent move goal.
Do they? Can you?
All is appreciated!
Deets and ways to aid: https://linktr.ee/khernandez
#mutualaid #directaid #disabled #artist #queer #lgbtq #poverty @[email protected] @[email protected] @disabledvoices @[email protected] @[email protected] @creativearts @povertyandinequality #spoonie #chronicpain #chronicillness @spoonie @queer
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my allergy shots didn’t get delivered yesterday as this is a specific medication can only be given exactly 2 weeks apart not even a day early if I get them of my current schedule I’ll
Have to cancel & reschedule 12 appointments so the next two weeks I need extra support & if I go MIA you know why 😂 -
my allergy shots didn’t get delivered yesterday as this is a specific medication can only be given exactly 2 weeks apart not even a day early if I get them of my current schedule I’ll
Have to cancel & reschedule 12 appointments so the next two weeks I need extra support & if I go MIA you know why 😂 -
my allergy shots didn’t get delivered yesterday as this is a specific medication can only be given exactly 2 weeks apart not even a day early if I get them of my current schedule I’ll
Have to cancel & reschedule 12 appointments so the next two weeks I need extra support & if I go MIA you know why 😂 -
my allergy shots didn’t get delivered yesterday as this is a specific medication can only be given exactly 2 weeks apart not even a day early if I get them of my current schedule I’ll
Have to cancel & reschedule 12 appointments so the next two weeks I need extra support & if I go MIA you know why 😂 -
My battery drains faster than yours.
That doesn't make me broken.
It just means I need to charge more often.
Resting is survival, not laziness. 🔋
#Spoonie #BipolarRecovery #RestIsProductiveDaily mindset inspiration for #BipolarLife: https://open.substack.com/pub/speakingbipolar/p/reframing-lazy-vs-recovering?r=y4fp9&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true
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Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concepthttps://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001
Screenshot from latest Science for ME weekly update
#EnergyLimitingConditions #Spoonie #chronicillness #Spoonies #ELCI #MEcfs #LongCovid #ChronicFatigue @mecfs @longcovid @pots
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New:
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment ConceptFree
https://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001Sympathetic exploration of topic
#EnergyLimitingConditions #Spoonie #Fatigue #chronicillness #Spoonies #ELCI @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid #POTS @pots -
CW: Eye contact
Gmorning luv 🩷
Miss ur face
Hope today is easy for you 🫶If its a rough one, then before the day is over, make sure you do something smol for yourself that you enjoy
Plz, for me 🙏
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2024-9-21 Treatment: Meditation Retreat (Zen Sesshin)
Slipped away to write this note to myself during the retreat amongst the evergreen grove, with a mug of oolong tea.
https://www.illmarks.com/2024-9-21-treatment-meditation-retreat-zen-sesshin/
#chronicIllness #chronicIllnessArt #disability #disabilityArt #healingArt #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme #spoonie #spoonieArt
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2024-9-21 Treatment: Meditation Retreat (Zen Sesshin)
Slipped away to write this note to myself during the retreat amongst the evergreen grove, with a mug of oolong tea.
https://www.illmarks.com/2024-9-21-treatment-meditation-retreat-zen-sesshin/
#chronicIllness #chronicIllnessArt #disability #disabilityArt #healingArt #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme #spoonie #spoonieArt
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2024-9-21 Treatment: Meditation Retreat (Zen Sesshin)
Slipped away to write this note to myself during the retreat amongst the evergreen grove, with a mug of oolong tea.
https://www.illmarks.com/2024-9-21-treatment-meditation-retreat-zen-sesshin/
#chronicIllness #chronicIllnessArt #disability #disabilityArt #healingArt #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme #spoonie #spoonieArt
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2024-9-21 Treatment: Meditation Retreat (Zen Sesshin)
Slipped away to write this note to myself during the retreat amongst the evergreen grove, with a mug of oolong tea.
https://www.illmarks.com/2024-9-21-treatment-meditation-retreat-zen-sesshin/
#chronicIllness #chronicIllnessArt #disability #disabilityArt #healingArt #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme #spoonie #spoonieArt
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New US research:
Defining fatigue from the experiences of patients living with chronic fatiguehttps://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2024.1429275/full
From what I can see, this does not refer to CFS specifically but CFS wasn't an exclusion either
#chronicfatigue #Spoonies #Spoonie #Spoonielife #ELCI
#chronicillness @chronicillness
@spoonies
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
What are energy-limiting conditions? An introduction to chronic illness at work
http://www.catherinehale.net/2024/02/what-are-energy-limiting-conditions.html
#chronicillness #Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #ELCI #MEcfs #LongCovid @chronicillness
@spoonies
@longcovid @mecfs -
CW: Discussion by 2 medical doctors of #suicide and #suicideprevention in the context of chronic illness (ME/CFS)
🧵
"Identifying & managing #suicidality amongst people with ME: A Conversation with Drs Lily Chu & Dr Eleanor Stein"Sympathetic (but long) exploration of topic by 2 MDs (both patients), a generalist & a psychiatrist
#suicide #SuicidePrevention @mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @chronicillness
@spoonies #Spoonie #chronicillness #chroniclife1/
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“Isolation is a way of life in the wastelands. You are too exhausted to go anywhere, to do anything, to meet anyone. The possibility of holding down a job is consigned to history. Travel is a privilege which others enjoy.”
#Spoonie #PwME #MEcfs #ELCI #homebound #housebound @spoonies @chronicillness
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Powerful piece of writing about living with an energy-limiting #chronicillness [in her case, #MyalgicEncephalomyelitis]Essay: 'To the Wastelands' by @GearoidinC
https://www.anniejournal.com/wastelands-geraldine-mccarthy
“No hero’s journey is ever written about the person who just stayed home. Maybe it’s time for that to change” (Nina @VerloreneZeit Jul 11)
#spoonie #ELCI #PwME #MEcfs #pwme #cfsme #spoonies @spoonies @chronicillness #ChronicFatigueSyndrome
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UK TUC report
Workers' experience of #LongCovid
Joint report by the TUC and Long Covid SupportThis Trades Unions Congress article includes a summary of legal duties on employers to make reasonable adjustments at work, disability and work related benefits, and a section on energy limiting illnesses including ME/CFS
https://www.tuc.org.uk/research-analysis/reports/workers-experience-long-covid
@longcovid #ELCI #spoonie @spoonies #chronicillness #mecfs #cfs #pwLC #PostCovid
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This was my first time sharing on the Endometriosis community:
I am 1 in 10
https://endometriosis.net/stories/i-am-1-in-10#1in10 #Endometriosis #EndoWarrior #FriEndo #PainfulPeriodsArentNormal #Menstruation #PeriodPain #PelvicPain #spoonie #chronicpain #NEISvoid
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“Be Curious & Put On Your Research Hat
It can be incredibly exhausting both physically and emotionally to explain all that is happening with me. While I appreciate you asking to better understand, it can be insightful to do your own research. Spend time looking at scientific journals, join a support group with me, watch YouTube videos, etc. This will help me conserve my spoons and bring a greater understanding into my experience”
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“I Am Not Lazy
I want to be able to do all the things I once did. I want to help with chores, errands, cook, wash my hair, run around with our children”
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can’t sleep because of how bad my hip hurts :( filing this under “times i feel like an 800 year old instead of a 21 year old” #chronicpain #spoonie #nervepain #disability #chronicillness #chronicallyill
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I’m new here and I like to talk about #mentalhealth #mentalillness #chronicillness #fibromyalgia #chronicpain #chronicfatigue #jointhypermobilitysyndrome #eds #traineetherapist #therapist #MentalHealthSupport #mentalhealthawareness #wellbeing #selfcare #student #CognitiveBehaviouralTherapy #therapy #publicsector #keyworker #healthcare #health #NEISvoid #advocates #currentevents #lgbt #twittermigration #millennial #millennialmh #mill3nnialmh #keeptalkingmh #itsoknottobeok #spoonie #spoonies 💓