#spoonies — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #spoonies, aggregated by home.social.
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CW: GAVE (watermelon belly) - systemic sclerosis
Watermelon belly … the name is so lighthearted. Even GAVE* - its medical acronym - belies its true nature.
It’s giving me grief today ‘cos I don’t tend to eat unless I am hungry (not hungry today - typically not until late afternoon on such days), and the lesions were upset there was no food.
Hoping the gastro clinic and hospital can schedule the laser gastroscopy soon to burn those lesions. Until then, I need to remember to nibble a teddy bear biscuit or something bland and starchy regularly particularly when not hungry.
*GAVE - gastric antral vascular ectasia - is a systemic sclerosis ‘feature’ that hurts like stomach ulcers and causes/adds to anaemia as the lesions like to bleed. The angry leaky blood vessels and lesions inside the stomach look like the stripes of a watermelon’s rind - it’s not that the belly is swollen (although I also have that from the DIEP operation’s lymph damage).
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CW: GAVE (watermelon belly) - systemic sclerosis
Watermelon belly … the name is so lighthearted. Even GAVE* - its medical acronym - belies its true nature.
It’s giving me grief today ‘cos I don’t tend to eat unless I am hungry (not hungry today - typically not until late afternoon on such days), and the lesions were upset there was no food.
Hoping the gastro clinic and hospital can schedule the laser gastroscopy soon to burn those lesions. Until then, I need to remember to nibble a teddy bear biscuit or something bland and starchy regularly particularly when not hungry.
*GAVE - gastric antral vascular ectasia - is a systemic sclerosis ‘feature’ that hurts like stomach ulcers and causes/adds to anaemia as the lesions like to bleed. The angry leaky blood vessels and lesions inside the stomach look like the stripes of a watermelon’s rind - it’s not that the belly is swollen (although I also have that from the DIEP operation’s lymph damage).
-
CW: GAVE (watermelon belly) - systemic sclerosis
Watermelon belly … the name is so lighthearted. Even GAVE* - its medical acronym - belies its true nature.
It’s giving me grief today ‘cos I don’t tend to eat unless I am hungry (not hungry today - typically not until late afternoon on such days), and the lesions were upset there was no food.
Hoping the gastro clinic and hospital can schedule the laser gastroscopy soon to burn those lesions. Until then, I need to remember to nibble a teddy bear biscuit or something bland and starchy regularly particularly when not hungry.
*GAVE - gastric antral vascular ectasia - is a systemic sclerosis ‘feature’ that hurts like stomach ulcers and causes/adds to anaemia as the lesions like to bleed. The angry leaky blood vessels and lesions inside the stomach look like the stripes of a watermelon’s rind - it’s not that the belly is swollen (although I also have that from the DIEP operation’s lymph damage).
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RE: https://disabled.social/@tomkindlon/117128147434986164
Link where people anywhere can watch this piece on an ambulatory wheelchair user
https://www.youtube.com/watch?v=_kYpNojX3es
#PwME #Spoonies #MEcfs #CFS #Spoonie @mecfs -
RE: https://disabled.social/@tomkindlon/117128147434986164
Link where people anywhere can watch this piece on an ambulatory wheelchair user
https://www.youtube.com/watch?v=_kYpNojX3es
#PwME #Spoonies #MEcfs #CFS #Spoonie @mecfs -
RE: https://disabled.social/@tomkindlon/117128147434986164
Link where people anywhere can watch this piece on an ambulatory wheelchair user
https://www.youtube.com/watch?v=_kYpNojX3es
#PwME #Spoonies #MEcfs #CFS #Spoonie @mecfs -
RE: https://disabled.social/@tomkindlon/117128147434986164
Link where people anywhere can watch this piece on an ambulatory wheelchair user
https://www.youtube.com/watch?v=_kYpNojX3es
#PwME #Spoonies #MEcfs #CFS #Spoonie @mecfs -
RE: https://disabled.social/@tomkindlon/117128147434986164
Link where people anywhere can watch this piece on an ambulatory wheelchair user
https://www.youtube.com/watch?v=_kYpNojX3es
#PwME #Spoonies #MEcfs #CFS #Spoonie @mecfs -
2/
Changing clothes largely means putting on my clothes on in the morning and taking them off at night, along with washing. I try to avoid it as much as possible apart from that as I try to avoid wasting energy.
I already did it sitting down.
#PwME #Spoonies #MyalgicEncephalomyelitis
#mecfs #longcovid @mecfs @longcovid -
2/
Changing clothes largely means putting on my clothes on in the morning and taking them off at night, along with washing. I try to avoid it as much as possible apart from that as I try to avoid wasting energy.
I already did it sitting down.
#PwME #Spoonies #MyalgicEncephalomyelitis
#mecfs #longcovid @mecfs @longcovid -
2/
Changing clothes largely means putting on my clothes on in the morning and taking them off at night, along with washing. I try to avoid it as much as possible apart from that as I try to avoid wasting energy.
I already did it sitting down.
#PwME #Spoonies #MyalgicEncephalomyelitis
#mecfs #longcovid @mecfs @longcovid -
2/
Changing clothes largely means putting on my clothes on in the morning and taking them off at night, along with washing. I try to avoid it as much as possible apart from that as I try to avoid wasting energy.
I already did it sitting down.
#PwME #Spoonies #MyalgicEncephalomyelitis
#mecfs #longcovid @mecfs @longcovid -
2/
Changing clothes largely means putting on my clothes on in the morning and taking them off at night, along with washing. I try to avoid it as much as possible apart from that as I try to avoid wasting energy.
I already did it sitting down.
#PwME #Spoonies #MyalgicEncephalomyelitis
#mecfs #longcovid @mecfs @longcovid -
2/
It falls disproportionately on people with conditions that have no definite biomarker or diagnostic test, are frequently misattributed to psychological causes, involve fluctuating symptoms and affect populations underrepresented in clinical research.
#mecfs #pots #longcovid #spoonies #chronicillness
@mecfs @longcovid @pots -
2/
It falls disproportionately on people with conditions that have no definite biomarker or diagnostic test, are frequently misattributed to psychological causes, involve fluctuating symptoms and affect populations underrepresented in clinical research.
#mecfs #pots #longcovid #spoonies #chronicillness
@mecfs @longcovid @pots -
2/
It falls disproportionately on people with conditions that have no definite biomarker or diagnostic test, are frequently misattributed to psychological causes, involve fluctuating symptoms and affect populations underrepresented in clinical research.
#mecfs #pots #longcovid #spoonies #chronicillness
@mecfs @longcovid @pots -
2/
It falls disproportionately on people with conditions that have no definite biomarker or diagnostic test, are frequently misattributed to psychological causes, involve fluctuating symptoms and affect populations underrepresented in clinical research.
#mecfs #pots #longcovid #spoonies #chronicillness
@mecfs @longcovid @pots -
2/
It falls disproportionately on people with conditions that have no definite biomarker or diagnostic test, are frequently misattributed to psychological causes, involve fluctuating symptoms and affect populations underrepresented in clinical research.
#mecfs #pots #longcovid #spoonies #chronicillness
@mecfs @longcovid @pots -
Energy Points Chart
https://ltcovh.prod.acquia-sites.com/sites/default/files/2024-02/Energy%20EnvelopeENG.pdf
Modified from BE Ainsworth et al. Compendium of physical activities: An update of activity codes and MET intensities.
#MEcfs #LongCovid #PwME #CFS #Spoonies #Spoonie @mecfs @longcovid
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Energy Points Chart
https://ltcovh.prod.acquia-sites.com/sites/default/files/2024-02/Energy%20EnvelopeENG.pdf
Modified from BE Ainsworth et al. Compendium of physical activities: An update of activity codes and MET intensities.
#MEcfs #LongCovid #PwME #CFS #Spoonies #Spoonie @mecfs @longcovid
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Energy Points Chart
https://ltcovh.prod.acquia-sites.com/sites/default/files/2024-02/Energy%20EnvelopeENG.pdf
Modified from BE Ainsworth et al. Compendium of physical activities: An update of activity codes and MET intensities.
#MEcfs #LongCovid #PwME #CFS #Spoonies #Spoonie @mecfs @longcovid
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Energy Points Chart
https://ltcovh.prod.acquia-sites.com/sites/default/files/2024-02/Energy%20EnvelopeENG.pdf
Modified from BE Ainsworth et al. Compendium of physical activities: An update of activity codes and MET intensities.
#MEcfs #LongCovid #PwME #CFS #Spoonies #Spoonie @mecfs @longcovid
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Energy Points Chart
https://ltcovh.prod.acquia-sites.com/sites/default/files/2024-02/Energy%20EnvelopeENG.pdf
Modified from BE Ainsworth et al. Compendium of physical activities: An update of activity codes and MET intensities.
#MEcfs #LongCovid #PwME #CFS #Spoonies #Spoonie @mecfs @longcovid
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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
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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
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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
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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
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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
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"Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers" by Kim Moy
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
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"Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers" by Kim Moy
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
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"Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers" by Kim Moy
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
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"Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers" by Kim Moy
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
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"Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers" by Kim Moy
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
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(Not specific to any one disability or illness)
EquipOT has some videos of disability hacks/tips:
https://www.youtube.com/@EquipMeOT/playlists#disability #chronicillness #spoonie #spoonies #disabilityaid
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(Not specific to any one disability or illness)
EquipOT has some videos of disability hacks/tips:
https://www.youtube.com/@EquipMeOT/playlists#disability #chronicillness #spoonie #spoonies #disabilityaid
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(Not specific to any one disability or illness)
EquipOT has some videos of disability hacks/tips:
https://www.youtube.com/@EquipMeOT/playlists#disability #chronicillness #spoonie #spoonies #disabilityaid
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(Not specific to any one disability or illness)
EquipOT has some videos of disability hacks/tips:
https://www.youtube.com/@EquipMeOT/playlists#disability #chronicillness #spoonie #spoonies #disabilityaid
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(Not specific to any one disability or illness)
EquipOT has some videos of disability hacks/tips:
https://www.youtube.com/@EquipMeOT/playlists#disability #chronicillness #spoonie #spoonies #disabilityaid
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🧵
"How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"https://longcovidmd.substack.com/p/you-may-qualify-for-ssdi
Blog with linked video recording.
Most of the advice is specific to SSDI rather than more generally useful internationallyAlso useful for other spoonies
#LongCovid #MEcfs #Spoonies
#Spoonie #POTS @pots #PwME #ME #MyalgicE
@mecfs
@longcovid1/
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🧵
"How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"https://longcovidmd.substack.com/p/you-may-qualify-for-ssdi
Blog with linked video recording.
Most of the advice is specific to SSDI rather than more generally useful internationallyAlso useful for other spoonies
#LongCovid #MEcfs #Spoonies
#Spoonie #POTS @pots #PwME #ME #MyalgicE
@mecfs
@longcovid1/
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🧵
"How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"https://longcovidmd.substack.com/p/you-may-qualify-for-ssdi
Blog with linked video recording.
Most of the advice is specific to SSDI rather than more generally useful internationallyAlso useful for other spoonies
#LongCovid #MEcfs #Spoonies
#Spoonie #POTS @pots #PwME #ME #MyalgicE
@mecfs
@longcovid1/
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🧵
"How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"https://longcovidmd.substack.com/p/you-may-qualify-for-ssdi
Blog with linked video recording.
Most of the advice is specific to SSDI rather than more generally useful internationallyAlso useful for other spoonies
#LongCovid #MEcfs #Spoonies
#Spoonie #POTS @pots #PwME #ME #MyalgicE
@mecfs
@longcovid1/
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🧵
"How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"https://longcovidmd.substack.com/p/you-may-qualify-for-ssdi
Blog with linked video recording.
Most of the advice is specific to SSDI rather than more generally useful internationallyAlso useful for other spoonies
#LongCovid #MEcfs #Spoonies
#Spoonie #POTS @pots #PwME #ME #MyalgicE
@mecfs
@longcovid1/
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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.
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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.
-
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.
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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.
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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.
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Wenn alles klappt, schaffe ich es morgen das erste Mal selbst zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀
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Wenn alles klappt, schaffe ich es morgen das erste Mal zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀
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Wenn alles klappt, schaffe ich es morgen das erste Mal selbst zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀
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Wenn alles klappt, schaffe ich es morgen das erste Mal zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀
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Wenn alles klappt, schaffe ich es morgen das erste Mal zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀
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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:
https://www.reddit.com/r/cfs/comments/1t11zip/fundraiser_for_ali_veryextremely_severe_me/
Thanks.
#MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies
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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:
https://www.reddit.com/r/cfs/comments/1t11zip/fundraiser_for_ali_veryextremely_severe_me/
Thanks.
#MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies
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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:
https://www.reddit.com/r/cfs/comments/1t11zip/fundraiser_for_ali_veryextremely_severe_me/
Thanks.
#MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies
-
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:
https://www.reddit.com/r/cfs/comments/1t11zip/fundraiser_for_ali_veryextremely_severe_me/
Thanks.
#MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies
-
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:
https://www.reddit.com/r/cfs/comments/1t11zip/fundraiser_for_ali_veryextremely_severe_me/
Thanks.
#MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies
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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.
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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.