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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. 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

  22. Good morning my phone is now shut off

    I need $45 more to turn it back on, asap
    my recovery clinic can call any time for a random med check, If I fail it (including not having a working phone), i lose my takehomes and would have to go into the center every day for dosing.

    Urgent ‼️

    Ven: d_fay
    PP: peach77

    #urgent #emergency #urgentmutualaid #disabled #spoonie #disability #lgbtq @[email protected] @[email protected] @disabledvoices @disability #artist #harmreduction

  23. 🌩️ 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

  24. 🧠☁️ 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

  25. 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

  26. 📖 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

  27. 🌩️ 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

  28. 💔 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

  29. 🏅 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

  30. 🦩 Daily Reminder from Flare-a

    Check in with your body before making plans.

    Not every day comes with the same energy, symptoms, or limitations. Before you commit, take a moment to ask yourself what your body can realistically handle today.

    Listening to your body isn’t weakness. It’s wisdom. 💗

    What is your body trying to tell you today?

    #ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #Disability #SelfCare #EnergyManagement #LivinInAFlare

  31. Do you ever miss your old life?

    Not because you’re ungrateful.

    But because chronic illness changed things.

    The independence.
    The freedom.
    The ability to make plans without calculating recovery time.

    Missing your old life doesn’t mean you’re giving up. It means you’re grieving a loss.

    And that’s okay.

    💜 What do you miss most about your old life?

    #ChronicIllness #ChronicPain #Spoonie #InvisibleIllness #disability