Important advice for anybody on any sort of #disability support when you are being evaluated for your capabilities and limitations:

DO NOT pace yourself for that meeting.

DO NOT top up your meds so you can function.

Instead do everything you can to max out your fatigue and your pain in the days prior.

These people have no understanding of PEM or the hacks we use to survive. SHOW them what you deal with daily.

It's counter intuitive, but success is you failing to perform.

#spoonies

Important advice for anybody on any sort of #disability support when you are being evaluated for your capabilities and limitations:

DO NOT pace yourself for that meeting.

DO NOT top up your meds so you can function.

Instead do everything you can to max out your fatigue and your pain in the days prior.

These people have no understanding of PEM or the hacks we use to survive. SHOW them what you deal with daily.

It's counter intuitive, but success is you failing to perform.

#spoonies

Some tips on showering and washing from a sympathetic & knowledgeable occupational therapist who specialises in ME/CFS, Long Covid & other energy-limiting chronic conditions

https://onelifelivedwell.substack.com/p/showers-shouldnt-cost-your-energy

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance #Spoonies #Spoonie

Some tips on showering and washing from a sympathetic & knowledgeable occupational therapist who specialises in ME/CFS, Long Covid & other energy-limiting chronic conditions

https://onelifelivedwell.substack.com/p/showers-shouldnt-cost-your-energy

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance #Spoonies #Spoonie

“Disability at home”

“This website documents the ingenuity and creativity that caregivers & disabled people, including those with chronic illnesses, use every day to make home accessible.” (repeat)

https://www.disabilityathome.org/

#disability #chronicillness #disabilityaids #disabled #caring #caregiving #spoonie #spoonies

“Disability at home”

“This website documents the ingenuity and creativity that caregivers & disabled people, including those with chronic illnesses, use every day to make home accessible.” (repeat)

https://www.disabilityathome.org/

#disability #chronicillness #disabilityaids #disabled #caring #caregiving #spoonie #spoonies

Hey #fediFriends
Is there interest in monthly support crowdfunding @hosford42 to work on building a matchmaking platform for folks to find local connections of the fediverse community?

An interface to find #meatspaceFediFriends basically.

This is a brand new idea as per:
https://disabled.social/@vlrny/115712588525647591

Ya'll can spitball scope and logistics below (pls untag me in replies, I'll just lurk)

🔄 Appreciated!

#spoonies #actuallyAutistic @LonelinessCorps #fediverse #hopepunk #community #startLocal

Hey #fediFriends
Is there interest in monthly support crowdfunding @hosford42 to work on building a matchmaking platform for folks to find local connections of the fediverse community?

An interface to find #meatspaceFediFriends basically.

This is a brand new idea as per:
https://disabled.social/@vlrny/115712588525647591

Ya'll can spitball scope and logistics below (pls untag me in replies, I'll just lurk)

🔄 Appreciated!

#spoonies #actuallyAutistic @LonelinessCorps #fediverse #hopepunk #community #startLocal

#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

Recommendations please - I can’t hold books any more. My hands cramp in the thumb and metacarpals when I grip, and my wrist screams under weight (tenosynovitis).

I would love your recommendations for how to read comfortably without needing to support the books in any way with hands.

Paperbacks (some thick) and hardback novels, and up to a4ish non fiction (although, the latter are usually ok on my knees or a table if they can open flattish). I would like to read sitting, and side-lying in bed - doesn’t need to be a single solution. ☺️

Thank you in advance!

#spoonies #ergonomics #disability #arthritis

Recommendations please - I can’t hold books any more. My hands cramp in the thumb and metacarpals when I grip, and my wrist screams under weight (tenosynovitis).

I would love your recommendations for how to read comfortably without needing to support the books in any way with hands.

Paperbacks (some thick) and hardback novels, and up to a4ish non fiction (although, the latter are usually ok on my knees or a table if they can open flattish). I would like to read sitting, and side-lying in bed - doesn’t need to be a single solution. ☺️

Thank you in advance!

#spoonies #ergonomics #disability #arthritis

Dear #MakersHour folk could you please give @disabledknitters a welcome (and the intro post a boost)?

You're also very welcome to join us if it applies to you. The #chronicallyIll knitters and #Spoonies are very much appreciated and part of the pack, but a group description has only so much space. 🧶

https://zirk.us/@aurora/115512145643155190

Dear #MakersHour folk could you please give @disabledknitters a welcome (and the intro post a boost)?

You're also very welcome to join us if it applies to you. The #chronicallyIll knitters and #Spoonies are very much appreciated and part of the pack, but a group description has only so much space. 🧶

https://zirk.us/@aurora/115512145643155190

Seeing is Believing:Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s & Quebec’s Social Benefits Tribunals

https://digitalcommons.schulichlaw.dal.ca/dlj/vol48/iss2/1/

"advocating for a shift away from entrenched stereotypes towards a more inclusive & equitable system"

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