#spooniesupport — Public Fediverse posts

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So when something feels harder to name or hold, it’s often not about the reality of the symptoms, but about the way we see them. #chronicillnesssupport #invisibleillness #advocacy #spooniesupport #occupationaltherapy

Tom: Doesn’t reference ME/CFS or Long Covid but does mention Fibromyalgia

#Fibromyalgia

From @onelife_livedwell on IG: Let’s talk about the disease prestige hierarchy, or the way some diagnoses are consistently seen as more legitimate and easier to recognize than others. Research shows this pattern holds over time, shaping what gets attention, funding, and clinical confidence. Layered into it is disability bias, the quiet pull to take conditions that aren’t easily fixed less seriously.

#chronicillness #invisibleillness #spooniesupport
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Sitze an meiner Steuer, habe mir beim Sachen-aus-dem-Drucker-fischen die Schulter verrenkt. Mir ist dizzy und schlecht, muss da jetzt durch.
Aber ich sehe gerade nochmal eure Unterstützungen und super lieben Kommentare, die via Ko-Fi eingingen. Ich blende Gutes so oft unbewusst aus. Danke, ihr Hasen! 😭💚

https://ko-fi.com/magic_cauldron

#spoonie #support #food #foodblog #autorin #spoonieSupport #meCfs #steuer

From @onelife_livedwell on IG: There’s a grief that comes with Long COVID [Tom: and other conditions too] that no one really prepares you for:
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The grief of not recognizing your own body.
The grief of missing old routines.
The grief of friends who faded away.
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It’s deep, layered and real. And there’s uncertainty too, of not knowing what might happen next.
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[deleted to fit]
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#longcovid #chronicillnesswarrior #feelings #invisiblegrief #spooniesupport #processingemotions

Schönes im Osternest statt Billigschoki
Okay, okay! Nix gegen Schoki. (Glashaus. Steine. 😅 Bin ich in meiner Rage-Bait-Era? 😬🙏) Ich kann ja auch nicht ohne. Zum Frühstück oder für Snacks brauche ich aber etwas mehr. Mein kleines Kochbuch passt auch toll ins Osterkörbchen, macht noch länger Freude und hilft gegen Hungi.
Rausgebracht im Selbstverlag. Erhältlich via Amazon, direkt bei mir oder über meinen Ko-Fi-Shop. (Werbung.)

https://www.amazon.de/dp/B0G6XZYHGV?
(Link zu Amazon)

https://ko-fi.com/s/8dee3a1e7b
(Link zu Ko-Fi)

Bestellung bei mir: [email protected]

Wie immer ganz lieben Dank für Boosts! Ohne euch geht halt gar nix. 🥰

#Osternest #Ostergeschenk #Ostern #Kochbuch #Ostern #Buch #Bookstodon
#FroheOstern #Geschenkideen #Spoonie #MealPrep #Selfpublishing #SpoonieSupport #SpooniesLife

From @onelife_livedwell on IG:
The PACE trial shaped an entire research paradigm, but the methodology tells a more complicated story. This is what happens when lived experience and research conclusions don’t align and why how we define things matters so much. #invisibleillness #invisibleillness #spooniesupport #mecfs #longcovid @mecfs @longcovid

Hello #spooniecommunity ☺️
My name is Hannah; it's good to be here with y'all!

I can't wait to meet some amazing people here. Introduce yourself?

#disabled #disability #DisabledCommunity #disabilitycommunity #spoonie #spooniesupport #spoonielife #chronicillness #chronicillnesswarrior #mentalhealth #mentalhealthmatters

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“As one Canadian in a support group explained many years ago: “I see myself as a different sort of person now and whereas in my life I’d always been, I was always a human doing. And now I’m a human being and that's the only way I can describe it.” Another noted: "You have to find some other way to define yourself that isn’t dependent on your ability to produce."

#spoonie #spoonies #spoonielife #spooniesupport #mecfs #cfs #PwMEs #pwme

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“It is helpful when you can help take care of my physical needs, so that I can focus on meeting my emotional needs. For example, when you offer to drive or do the dishes, you just saved several of my spoons so I can use them elsewhere in my day. My spoons are my lifeline. Please support me in how I use them”

#spoonie @spoonies #spoonies #spoonielife #SpoonieThings #spooniesupport #chronicillness #chronicallyill

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“My Spoons Are Precious/Honor How I Use Them

Spoon theory is a metaphor used to describe the amount of mental or physical energy a person has available for daily activities and tasks. A spoon represents a unit of energy allocated to each exertion. I must use each spoon (unit of energy) wisely so that I don’t run out before the end of the day”

@spoonies #spoonie #spoonies #SpoonieChat #spoonielife #spooniesupport #spooniecommunity #chronicillness