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#spoonie — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #spoonie, aggregated by home.social.

  1. ‪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

    @mecfs @longcovid

  2. ‪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

    @mecfs @longcovid

  3. ‪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

    @mecfs @longcovid

  4. ‪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

    @mecfs @longcovid

  5. ‪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

    @mecfs @longcovid

  6. 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?

  7. From Canada 🇨🇦

    ‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications

    Free fulltext:
    digitalcommons.osgoode.yorku.c

    #MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
    #invisibleillness
    #ChronicIllnesses
    #Spoonies
    #Spoonie
    @mecfs

  8. From Canada 🇨🇦

    ‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications

    Free fulltext:
    digitalcommons.osgoode.yorku.c

    #MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
    #invisibleillness
    #ChronicIllnesses
    #Spoonies
    #Spoonie
    @mecfs

  9. From Canada 🇨🇦

    ‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications

    Free fulltext:
    digitalcommons.osgoode.yorku.c

    #MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
    #invisibleillness
    #ChronicIllnesses
    #Spoonies
    #Spoonie
    @mecfs

  10. From Canada 🇨🇦

    ‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications

    Free fulltext:
    digitalcommons.osgoode.yorku.c

    #MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
    #invisibleillness
    #ChronicIllnesses
    #Spoonies
    #Spoonie
    @mecfs

  11. 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?!

    #inclusion #spoonie #AdhdBrain #hypoactive #accessability

  12. 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: 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

  13. 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: 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

  14. 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: 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

  15. 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: 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

  16. 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: 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

  17. 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 😂

    #MCAS #chronicillness #spoonie

  18. 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 😂

    #MCAS #chronicillness #spoonie

  19. 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 😂

    #MCAS #chronicillness #spoonie

  20. 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 😂

    #MCAS #chronicillness #spoonie

  21. 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 🙏

    #selfie #ootd #newfriends #friendscrolling #spoonie

  22. 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

    forums.phoenixrising.me/thread

    #suicide #SuicidePrevention @mecfs
    #MyalgicEncephalomyelitis #MEcfs #CFS #PwME @chronicillness
    @spoonies #Spoonie #chronicillness #chroniclife

    1/

  23. 2/

    “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

  24. 🧵
    Powerful piece of writing about living with an energy-limiting #chronicillness [in her case, #MyalgicEncephalomyelitis]

    Essay: 'To the Wastelands' by @GearoidinC

    anniejournal.com/wastelands-ge

    “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

    1/

  25. UK TUC report
    Workers' experience of #LongCovid
    Joint report by the TUC and Long Covid Support

    This 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

    tuc.org.uk/research-analysis/r

    @longcovid #ELCI #spoonie @spoonies #chronicillness #mecfs #cfs #pwLC #PostCovid

  26. 24/

    “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”

    @spoonies @chronicillness #spoonie #ELCI

  27. 15/

    “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”

    #spoonie #ELCI #MEcfs #spoonielife

  28. 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