home.social

#spoonies — Public Fediverse posts

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

  1. One perk of a mobile home is everything is so close.

    Now here on holidays for a full week and no days with over 1000 steps. Includes Saturday where lots of family here for day so had lots of trips to bedroom for 30-minute rest breaks.

    My discipline paid off as no significant post-exertional malaise. 🙂

    #PwME #MEcfs #longcovid #spoonie #spoonies #chronicillness @mecfs @longcovid

  2. One perk of a mobile home is everything is so close.

    Now here on holidays for a full week and no days with over 1000 steps. Includes Saturday where lots of family here for day so had lots of trips to bedroom for 30-minute rest breaks.

    My discipline paid off as no significant post-exertional malaise. 🙂

    #PwME #MEcfs #longcovid #spoonie #spoonies #chronicillness @mecfs @longcovid

  3. One perk of a mobile home is everything is so close.

    Now here on holidays for a full week and no days with over 1000 steps. Includes Saturday where lots of family here for day so had lots of trips to bedroom for 30-minute rest breaks.

    My discipline paid off as no significant post-exertional malaise. 🙂

    #PwME #MEcfs #longcovid #spoonie #spoonies #chronicillness @mecfs @longcovid

  4. One perk of a mobile home is everything is so close.

    Now here on holidays for a full week and no days with over 1000 steps. Includes Saturday where lots of family here for day so had lots of trips to bedroom for 30-minute rest breaks.

    My discipline paid off as no significant post-exertional malaise. 🙂

    #PwME #MEcfs #longcovid #spoonie #spoonies #chronicillness @mecfs @longcovid

  5. One perk of a mobile home is everything is so close.

    Now here on holidays for a full week and no days with over 1000 steps. Includes Saturday where lots of family here for day so had lots of trips to bedroom for 30-minute rest breaks.

    My discipline paid off as no significant post-exertional malaise. 🙂

    #PwME #MEcfs #longcovid #spoonie #spoonies #chronicillness @mecfs @longcovid

  6. "Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers" by Kim Moy

    caregiverwisdom.net/post/navig

    Her focus in general is on caregivers but most of this article is also relevant for patients

    #MEcfs #LongCovid #Spoonies #Spoonie #ChronicallyIll @mecfs @longcovid #POTS @pots

  7. "Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers" by Kim Moy

    caregiverwisdom.net/post/navig

    Her focus in general is on caregivers but most of this article is also relevant for patients

    #MEcfs #LongCovid #Spoonies #Spoonie #ChronicallyIll @mecfs @longcovid #POTS @pots

  8. "Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers" by Kim Moy

    caregiverwisdom.net/post/navig

    Her focus in general is on caregivers but most of this article is also relevant for patients

    #MEcfs #LongCovid #Spoonies #Spoonie #ChronicallyIll @mecfs @longcovid #POTS @pots

  9. "Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers" by Kim Moy

    caregiverwisdom.net/post/navig

    Her focus in general is on caregivers but most of this article is also relevant for patients

    #MEcfs #LongCovid #Spoonies #Spoonie #ChronicallyIll @mecfs @longcovid #POTS @pots

  10. "Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers" by Kim Moy

    caregiverwisdom.net/post/navig

    Her focus in general is on caregivers but most of this article is also relevant for patients

    #MEcfs #LongCovid #Spoonies #Spoonie #ChronicallyIll @mecfs @longcovid #POTS @pots

  11. 🧵
    "How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"

    longcovidmd.substack.com/p/you

    Blog with linked video recording.
    Most of the advice is specific to SSDI rather than more generally useful internationally

    Also useful for other spoonies

    #LongCovid #MEcfs #Spoonies
    #Spoonie #POTS @pots #PwME #ME #MyalgicE
    @mecfs
    @longcovid

    1/

  12. 🧵
    "How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"

    longcovidmd.substack.com/p/you

    Blog with linked video recording.
    Most of the advice is specific to SSDI rather than more generally useful internationally

    Also useful for other spoonies

    #LongCovid #MEcfs #Spoonies
    #Spoonie #POTS @pots #PwME #ME #MyalgicE
    @mecfs
    @longcovid

    1/

  13. 🧵
    "How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"

    longcovidmd.substack.com/p/you

    Blog with linked video recording.
    Most of the advice is specific to SSDI rather than more generally useful internationally

    Also useful for other spoonies

    #LongCovid #MEcfs #Spoonies
    #Spoonie #POTS @pots #PwME #ME #MyalgicE
    @mecfs
    @longcovid

    1/

  14. 🧵
    "How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"

    longcovidmd.substack.com/p/you

    Blog with linked video recording.
    Most of the advice is specific to SSDI rather than more generally useful internationally

    Also useful for other spoonies

    #LongCovid #MEcfs #Spoonies
    #Spoonie #POTS @pots #PwME #ME #MyalgicE
    @mecfs
    @longcovid

    1/

  15. 🧵
    "How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"

    longcovidmd.substack.com/p/you

    Blog with linked video recording.
    Most of the advice is specific to SSDI rather than more generally useful internationally

    Also useful for other spoonies

    #LongCovid #MEcfs #Spoonies
    #Spoonie #POTS @pots #PwME #ME #MyalgicE
    @mecfs
    @longcovid

    1/

  16. Any other spoonies have a very specific indicator that they're worse than usual?

    For me, it's when my elbows ache. The rest of me can ache and it's "fine", but if my elbows are achy, I absolutely need to rest.

    #ChronicIllness #spoonies

  17. Any other spoonies have a very specific indicator that they're worse than usual?

    For me, it's when my elbows ache. The rest of me can ache and it's "fine", but if my elbows are achy, I absolutely need to rest.

    #ChronicIllness #spoonies

  18. Any other spoonies have a very specific indicator that they're worse than usual?

    For me, it's when my elbows ache. The rest of me can ache and it's "fine", but if my elbows are achy, I absolutely need to rest.

    #ChronicIllness #spoonies

  19. Any other spoonies have a very specific indicator that they're worse than usual?

    For me, it's when my elbows ache. The rest of me can ache and it's "fine", but if my elbows are achy, I absolutely need to rest.

    #ChronicIllness #spoonies

  20. Any other spoonies have a very specific indicator that they're worse than usual?

    For me, it's when my elbows ache. The rest of me can ache and it's "fine", but if my elbows are achy, I absolutely need to rest.

    #ChronicIllness #spoonies

  21. Wenn alles klappt, schaffe ich es morgen das erste Mal selbst zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀

    liegenddemo.de/#termine

    #GoFundMECFS #spoonies #Flensburg

  22. Wenn alles klappt, schaffe ich es morgen das erste Mal zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀

    liegenddemo.de/#termine

    #GoFundMECFS #spoonies #Flensburg

  23. Wenn alles klappt, schaffe ich es morgen das erste Mal selbst zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀

    liegenddemo.de/#termine

    #GoFundMECFS #spoonies #Flensburg

  24. Wenn alles klappt, schaffe ich es morgen das erste Mal zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀

    liegenddemo.de/#termine

    #GoFundMECFS #spoonies #Flensburg

  25. Wenn alles klappt, schaffe ich es morgen das erste Mal zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀

    liegenddemo.de/#termine

    #GoFundMECFS #spoonies #Flensburg

  26. Hi there,

    I just wanted to surface a Reddit post here on the fediverse. A very severe/extreme ME/CFS sufferer is currently in a precarious situation and needing financial support.

    Her name is Ali and you can read more about her situation on Reddit here:

    reddit.com/r/cfs/comments/1t11

    Thanks.

    #MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies

  27. Hi there,

    I just wanted to surface a Reddit post here on the fediverse. A very severe/extreme ME/CFS sufferer is currently in a precarious situation and needing financial support.

    Her name is Ali and you can read more about her situation on Reddit here:

    reddit.com/r/cfs/comments/1t11

    Thanks.

    #MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies

  28. Hi there,

    I just wanted to surface a Reddit post here on the fediverse. A very severe/extreme ME/CFS sufferer is currently in a precarious situation and needing financial support.

    Her name is Ali and you can read more about her situation on Reddit here:

    reddit.com/r/cfs/comments/1t11

    Thanks.

    #MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies

  29. Hi there,

    I just wanted to surface a Reddit post here on the fediverse. A very severe/extreme ME/CFS sufferer is currently in a precarious situation and needing financial support.

    Her name is Ali and you can read more about her situation on Reddit here:

    reddit.com/r/cfs/comments/1t11

    Thanks.

    #MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies

  30. Hi there,

    I just wanted to surface a Reddit post here on the fediverse. A very severe/extreme ME/CFS sufferer is currently in a precarious situation and needing financial support.

    Her name is Ali and you can read more about her situation on Reddit here:

    reddit.com/r/cfs/comments/1t11

    Thanks.

    #MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies

  31. CW: Spoonies - physiotherapists have magical hands

    Gluteus medius is a pain to have cramped and become inflamed, and to have had physio on, with referred twinges around and through the hip into the thigh. It was clear where the edges gave way to the piriformis though - those too familiar sciatic tendrils reached toward the ankle. But those only get angry when poked.

    Most of the physios at the reha zentrum have magical hands, and I’m grateful they have space for chronic treatments, and not just joint surgery recoveries - their primary clientele.

    #spondyloarthritis #spoonies

  32. CW: Spoonies - physiotherapists have magical hands

    Gluteus medius is a pain to have cramped and become inflamed, and to have had physio on, with referred twinges around and through the hip into the thigh. It was clear where the edges gave way to the piriformis though - those too familiar sciatic tendrils reached toward the ankle. But those only get angry when poked.

    Most of the physios at the reha zentrum have magical hands, and I’m grateful they have space for chronic treatments, and not just joint surgery recoveries - their primary clientele.

    #spondyloarthritis #spoonies

  33. CW: Spoonies - physiotherapists have magical hands

    Gluteus medius is a pain to have cramped and become inflamed, and to have had physio on, with referred twinges around and through the hip into the thigh. It was clear where the edges gave way to the piriformis though - those too familiar sciatic tendrils reached toward the ankle. But those only get angry when poked.

    Most of the physios at the reha zentrum have magical hands, and I’m grateful they have space for chronic treatments, and not just joint surgery recoveries - their primary clientele.

    #spondyloarthritis #spoonies

  34. 3/

    Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:

    • Insufficient preparation for chronic illness
    • Common and serious diseases are neglected in medical training
    • Psychosomatic illness
    • Inability to accept uncertainty

    #MedicalGaslighting #Gaslighting #MedMastodon
    @longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses

  35. 3/

    Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:

    • Insufficient preparation for chronic illness
    • Common and serious diseases are neglected in medical training
    • Psychosomatic illness
    • Inability to accept uncertainty

    #MedicalGaslighting #Gaslighting #MedMastodon
    @longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses

  36. 3/

    Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:

    • Insufficient preparation for chronic illness
    • Common and serious diseases are neglected in medical training
    • Psychosomatic illness
    • Inability to accept uncertainty

    #MedicalGaslighting #Gaslighting #MedMastodon
    @longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses

  37. 3/

    Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:

    • Insufficient preparation for chronic illness
    • Common and serious diseases are neglected in medical training
    • Psychosomatic illness
    • Inability to accept uncertainty

    #MedicalGaslighting #Gaslighting #MedMastodon
    @longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses

  38. 3/

    Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:

    • Insufficient preparation for chronic illness
    • Common and serious diseases are neglected in medical training
    • Psychosomatic illness
    • Inability to accept uncertainty

    #MedicalGaslighting #Gaslighting #MedMastodon
    @longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses

  39. "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

    mecfs.substack.com/p/medical-g

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

  40. "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

    mecfs.substack.com/p/medical-g

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