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#spoonie — Public Fediverse posts

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

  1. 4/
    “It can be helpful to explore abandoning (or at least curbing) an achievement-orientation to life (i.e., life is about a checklist of completed accomplishments) and instead adopting an experience-orientation to life (i.e., life is about having all kinds of varied pleasant and difficult experiences that we can use for various things like connection or growth).”

    #chronicillness #spoonie #mecfs #longcovid
    @mecfs @longcovid

  2. 4/
    “It can be helpful to explore abandoning (or at least curbing) an achievement-orientation to life (i.e., life is about a checklist of completed accomplishments) and instead adopting an experience-orientation to life (i.e., life is about having all kinds of varied pleasant and difficult experiences that we can use for various things like connection or growth).”

    #chronicillness #spoonie #mecfs #longcovid
    @mecfs @longcovid

  3. 4/
    “It can be helpful to explore abandoning (or at least curbing) an achievement-orientation to life (i.e., life is about a checklist of completed accomplishments) and instead adopting an experience-orientation to life (i.e., life is about having all kinds of varied pleasant and difficult experiences that we can use for various things like connection or growth).”

    #chronicillness #spoonie #mecfs #longcovid
    @mecfs @longcovid

  4. 4/
    “It can be helpful to explore abandoning (or at least curbing) an achievement-orientation to life (i.e., life is about a checklist of completed accomplishments) and instead adopting an experience-orientation to life (i.e., life is about having all kinds of varied pleasant and difficult experiences that we can use for various things like connection or growth).”

    #chronicillness #spoonie #mecfs #longcovid
    @mecfs @longcovid

  5. 4/
    “It can be helpful to explore abandoning (or at least curbing) an achievement-orientation to life (i.e., life is about a checklist of completed accomplishments) and instead adopting an experience-orientation to life (i.e., life is about having all kinds of varied pleasant and difficult experiences that we can use for various things like connection or growth).”

    #chronicillness #spoonie #mecfs #longcovid
    @mecfs @longcovid

  6. ‪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

  7. ‪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

  8. ‪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

  9. ‪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

  10. ‪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

  11. I did *not* need a flare 4 days before surgery, no thank you. I hope it’s just the heat. Not that it’ll be much cooler in Porto. And the Ragweed pollen certainly isn’t helping.

    I was planning to deep clean the bathroom today so it’ll be clean when we get back. It’s pretty fucking gross, ngl. But I’m in so much pain :(

    #spoonie #MCAS

  12. I did *not* need a flare 4 days before surgery, no thank you. I hope it’s just the heat. Not that it’ll be much cooler in Porto. And the Ragweed pollen certainly isn’t helping.

    I was planning to deep clean the bathroom today so it’ll be clean when we get back. It’s pretty fucking gross, ngl. But I’m in so much pain :(

    #spoonie #MCAS

  13. I did *not* need a flare 4 days before surgery, no thank you. I hope it’s just the heat. Not that it’ll be much cooler in Porto. And the Ragweed pollen certainly isn’t helping.

    I was planning to deep clean the bathroom today so it’ll be clean when we get back. It’s pretty fucking gross, ngl. But I’m in so much pain :(

    #spoonie #MCAS

  14. I did *not* need a flare 4 days before surgery, no thank you. I hope it’s just the heat. Not that it’ll be much cooler in Porto. And the Ragweed pollen certainly isn’t helping.

    I was planning to deep clean the bathroom today so it’ll be clean when we get back. It’s pretty fucking gross, ngl. But I’m in so much pain :(

    #spoonie #MCAS

  15. 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?

  16. 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?

  17. 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?

  18. 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?

  19. 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?

  20. 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

  21. Sympathetic 3-minute TV piece:
    'I miss my freedom': Young woman with chronic fatigue shares reality of living with ME.

    I had to set my VPN to the UK to be able to watch it

    itv.com/watch/news/i-miss-my-f

    Discusses fluctuating disabilities and how she uses a mobility aid despite being able to walk a little (like myself)

    #MEcfs #PwME #CFS #ME #MyalgicE
    @mecfs
    #chronicillness #Spoonie

  22. I'm so sick of being isolated bc people can't fathom what it's like to live with 24 diagnoses
    I'm so tired of people not believing me and undermining me

    The amount of pain Ive had to live w since childhood is more pain than most experience in their life. it's not a competition I just wish I was given respect

    My inner child will always struggle w accepting/understanding how 98% of my family could turn their backs on me bc Im disabled

    #ableism #disabled #family #estranged #disability #spoonie

  23. 4/
    “If this is where you are, or where someone you love is, I hope this phrase gives you a small place to stand and is a reminder that the journey has a name💛”

    #undiagnosed #undiagnosedillness #invisibleillness #spoonie #chronicillness

  24. RE: mastodon.social/@ellespeaks/11

    Food goal due yesterday ‼⚠️
    Meds due soon $260 = safe

    Disabled, cant work and no family

    Today I went no contact w My mom. I am not doing well. Its very hard for me to get on here right now due to severe depression so i really appreciate boosts

    V: d_fay
    P: peach77

    Happy last few days of #disabilitypridemonth

    #Mutualaid #MutualAidRequest #MutualAidSavesLives #disabled #spoonie #helpfolkslive2026 #lgbtq #queer #artist @[email protected] @[email protected] @disabledvoices
    @povertyandinequality #estranged

  25. 🌩️ Flare Report: Pain

    Pain isn’t always visible.

    It can burn, ache, throb, stab, or feel like your entire body weighs a thousand pounds. Just because others can’t see it doesn’t mean it isn’t real.

    💜 If you’re hurting today, remember: You don’t have to earn your rest. Pain is reason enough.

    ❓What’s ONE thing you wish healthy people understood about chronic pain?

    #ChronicPain #ChronicIllness #Spoonie #InvisibleIllness #FlareReport #PainAwareness #Disability #spoonielife

  26. 🧠☁️ Flare Report: Brain Fog

    Brain fog is more than being forgetful.

    It’s searching for the right words, losing your train of thought, rereading the same sentence, or walking into a room and forgetting why.

    For many of us with chronic illness, it’s one of the hardest invisible symptoms to explain.

    💜 Be kind to yourself on the foggy days.

    What’s the funniest or most frustrating brain fog moment you’ve had?

    #BrainFog #FlareReport #ChronicIllness #Spoonie #InvisibleIllness #DisabilityAwareness

  27. One of the hardest parts of chronic illness isn’t just the fatigue.

    It’s grieving the life you thought you’d have.

    Today’s Funny Friday Flare Report features Chaos, who reminds us:

    🐱 “Apparently surviving counts as productivity today.”

    And on some days… that’s more than enough. 💜

    What has chronic illness made you grieve that people don’t usually think about?

    #ChronicIllness #Spoonie #InvisibleIllness #Fatigue #Grief #ChronicPain #Disability #funnyfriday

  28. 📖 Spoonie Word of the Day

    Flarecation (noun): A vacation you never wanted but your body booked anyway. 😅

    No beach. No suitcase. Just fatigue, pain, brain fog, canceled plans, and hoping tomorrow is a little kinder.

    💜 What’s the symptom that usually sends you on a flarecation?

    #Spoonie #ChronicIllness #ChronicPain #InvisibleIllness #Flarecation #BrainFog #Fatigue #MedicalHumor #LivinInAFlare

  29. 🌩️ Today’s Flare Report: Fatigue

    Not all fatigue is solved by sleep.

    Sometimes it’s waking up exhausted.
    Sometimes it’s choosing between a shower and making dinner.
    Sometimes surviving the day is the accomplishment.

    💜 Pain: Moderate
    🌬️ Energy: Low
    🧠 Brain Fog: High
    🥄 Spoon Forecast: Limited

    If today’s forecast matches yours, be gentle with yourself.

    How’s your forecast today? 💜

    #ChronicIllness #ChronicPain #Fatigue #BrainFog #Spoonie #InvisibleIllness #Disability #ChronicFatigue

  30. 💔 Losing your career because of chronic illness is a grief many people don’t talk about.

    It’s not just the job.

    It’s the independence, purpose, routine, and future you imagined.

    If you’ve had to leave a career because of your health, please know you’re not alone.

    Your worth is not defined by a job title. You are still valuable, capable, and worthy. 💜

    What career or job do you miss the most?

    #ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #Disability #ChronicIllnessCommunity l

  31. 🏅 Former Athlete. Current Professional Napper. 😴

    Chronic illness has a funny way of changing your goals.

    I used to celebrate being busy. Now I celebrate listening to my body before it forces me to slow down.

    And honestly? Some naps deserve Olympic recognition. 😂💜

    What’s your chronic illness superpower?

    #ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #disabilityhumor