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    My Friend May Be Right!?

    I've recently taken on a part time job at a department store. $13/hr. My friend asked me: why are you doing this to yourself?
    (She may be right) but I need $ to live, and my $32/hr contract job (easy) has ended. So what's a Gal to do? 🤷
    #Fibromyalgia #ChronicFatigue #hashimotos #ChronicDepression #ChronicPain #Spoonies

    7 reactions 5 comments
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    Chronic illness and Dating

    I have recently started a friendship with a guy that really likes me, and whenever I’m not feeling good, he asks me what he can do to help me. The issue is that I don’t know what he can do to help me. So, I tell him nothing. Sometimes I feel like he doesn’t understand that my illness isn’t something that you can just flip a switch and feel better. Does anyone have experience, and any advice to give, on dating with chronic illness?

    #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #DatingWithAChronicIllness #LymeDisease #GravesDisease #Spoonies #Anxiety #PTSD

    7 reactions 5 comments
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    Wet and Windy It Is… Sleep We Must!

    Quoth the Yoda Puppy, “The day is dark and cold and dreary; it rains, and the wind is never weary. Strong the force was with that poet, Henry Wadsworth Longfellow.”

    Happy Monday all—Yoda Puppy and I wish you a good week with more light than dark 🤍🖤

    #Dogs #MightyPets #bed #MightyTogether #MightyMoment #Fun #funny #Laugh #StarWars #Quotes #MightyQuotes #ChronicIllness #Spoonie #Spoonies

    2 reactions 7 comments
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    World, I Want To Get Better

    It’s been raining most of the weekend in England. After a week spent in hospital, and 7 weeks from my first A&E trip for ‘concerning’ heart waves, my view is currently limited to my bedroom window. My “Room Without A View” as I’ve been calling it.

    Rain actually makes me feel better mentally. I feel comforted when the world outside matches the bleakness of my insides. Where “muggles” dream of beach escapes, I hold in my heart a Walden worthy longing to escape to countryside cottages with wood burning stoves, mismatched mugs and cutlery, surrounded by woodlands and heaths. Give me the tumult of the Brontë sisters as opposed to suffocating heat any day.

    All this preamble serves to bring me back to my original point; the rain. More specially I have had this song by the immensely talented Sia stuck in my head for days. The song is significant in it’s own right. But with a few tweaks, I think it is all the more meaningful to the chronically ill. I offer it up to you now in the hope that it helps to convey something of what our lived experience is like. And perhaps some of our shared fears about what life may not hold in stall for us all.

    I hope you enjoy it. I send with it gentle hugs, comforting light, and quaint little spoons ✨

    World, I want to be better

    I want my life to matter

    I am afraid I have no purpose here

    I watch the news on TV

    I am abandoned daily

    I am afraid you don’t see the real me

    And the rain it falls, rain it falls

    Drowning the seeds of love and hope, love and hope

    I don’t want to stay here, stuck in the weeds

    I feel alone in all this

    I’m not faking, I promise

    Bed bound, I can’t do anything

    I feel alone in all this

    I’m really trying, I promise

    I wish I had people standing together with me

    Maybe then I could do anything

    World, I want to be better

    I want my life to matter

    Without your help I have no purpose here

    Have you the courage to change?

    Change and see the real me

    Please don’t leave me here, stuck in the weeds

    Have the courage to change

    Change the way you see me, today.

    #ChronicIllness #Poetry #Sia #Doyouseemenow

    #Rain #bedbound #thisismetrying #Spoonies

    4 comments
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    What do you wish your newly diagnosed self knew about your disease?

    I was diagnosed with RA 20 years ago. A few other autoimmune disorders followed shortly after. I went through so much struggle physically and mentally. It took me years to understand that I was not to blame.

    If I knew then what I know now I would tell myself to not allow others to make me feel responsible for developing my disease and I did something wrong to become sick. I would remind myself that my illness does not mean I am a bad or lazy person who brought on my disease.

    Before my diagnosis, I took good care of my body; I exercised, ate healthy foods, and lived a good life. I continued that after RA. But my body (and other people) often tried to imply that 'if only I did a, b, or c, I would be fine'.

    If you knew then, what you know now, what would you tell yourself to help you continue to live as best as you could? #Spoonies #ChronicIllness #

    15 comments
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    Interest in a podcast specifically for people with chronic illness and/or disability?

    Hi all,

    I'm brand new here, trying this out for the first time. I'm working on putting together a podcast made by and for people living which chronic illness and/or disability. The goal is to share real stories of how people adapt to their new lives, challenges they've faced, what they've learned, how they cope, and also interviewing professionals who work with people with chronic pain. This is specifically for people who used to live "normal" lives, but had to completely change their lives due to medical issue or trauma. The focus is not on any specific condition, but about how we deal with them.

    Does this sound like something appealing to you? What topics would you like to see covered in this podcast? What would be most helpful for you? Also anyone good with computers interested in helping to create the podcast, please send me a message! #neisvoid #disabilitysupport #Spoonies #reimaginelife2 #Chronicpainwarrior

    1 reaction 1 comment
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    Spoon Theory and My Pandemic Pickle

    When we were all in lockdown and everything was going so, so slowly... that felt like a pretty good pace for me. It was all kinds of other BAD things for me, but the pace of life was slow without a lot of physical demands on my energy.

    Now that life is mostly back to normal where I live there is something that surprises me. The friends that I got to know during the covid crisis only know the me that seems 100% normal, like them. Why not? The pace was slow and it wasn't hard to hang onto my spoons. My mind, yes? My spoons, not so much. I was in a weird comfort zone physically. But, now that everything here is open they, being very energetic people, are constantly on the go. Suddenly I feel pressure to do this, do that, go skiing, ride in a boat on choppy water, hike, go go go go go ..... and it caught me by surprise. Why are my friends, who I know love me, trying so hard to convince me to do things with them that I can't do, and why don't they understand when I say no? They seem confused, and they push a little, thinking that I'm in need of a nudge. That's not it though, and I begin to feel pressured. The tiny red flag of resentment begins to stir and I do NOT want that.

    I spent a lot of time trying to figure out why it was so hard for me to resist all the pressure. Why can't I just accept that they want to spend time doing things they love? Why are they so surprised? I haven't changed, so what has?

    The time has come when I have to explain things to them, but I had no idea where this was all coming from. Then it hit me. They only know the me who can do almost anything, as long as we are all doing almost nothing.

    Today I remembered the Spoon Theory and realized that I basically live according to the spoons every day of my life, without really thinking about it any more. I ration my energy carefully and consider the cost if I over do. I know what causes pain and what I can get away with. Sometimes it is worth it to push my boundaries a little, actually, so I ready myself for recovery time. BUT usually it is not worth it, so I try to live in comfortable awareness of my limits and abilities. I found a great video that I will use to help them understand what is going on with me in hopes of heading off ill will and, the dreaded "let's fix her" process of helping. I'll paste it down below in case you find yourself in a similar post pandemic pickle.

    All this to say, the pace of the pandemic might have felt like a strange and hard to explain relief to anyone with chronic illness who limits their spoons. It finally makes sense to me, though, why re-entry is much harder than I thought. Everyone else sped up while I am basically just beebopping along at a little better than lockdown speed. So, be kind to yourself, and also to your friends who might be a little confused about the reality that you might not be able to keep up, you might have to say no, or you might not really understand what's going on either.... just keep on loving each other and try to explain where you're at. That's why I'm going to do. Wish me luck!

    youtu.be/Hh59lPG5ifk

    #chroniclyme #Spoonies #ChronicIllness #Friends

    3 comments
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    We can do this!!!

    Filling my weekly med boxes can be confusing at times….I’m always messing up and saying “What the f*ck!”
    This morning I was staring at it, overwhelmed. I’m thinking “Hope I don’t screw it up this time” and suddenly my warped brain came up with a sentence that goes along with the days of the week:
    S poonies
    M aster
    T he
    W hat
    T he
    F *ck
    ‘S
    We truly do figure out a way to master all the WTF’s in life my friends! Every time I do my meds now, I will look at it with renewed confidence and I’ll master it! 🙌 Decide what you’re going to master and share it with me, I’d love to hear!
    #meds #wtf #Spoonies #Confidence

    4 comments
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    when no one listens #Spoonies #medicalgaslighting

    This the only place that maybe someone will listen to me. I am so tired and not the sleep tired. Just bone weary were no matter how much sleep you get it's not enough. Were you live on caffine because you have to be perfect. What am I kidding i will never be perfect.

    So anyways I went to my follow up from my MRI and there's nothing wrong Just lose weight and go to PT and OT because that will help you to fill out paper work and everything else. But I am tired of everytime I go to the dr it's a wase of time. Have a zoom appointment today and know it will be another wase of time. To add DBT to my list of stuff that will not help. Who am I kidding none of this will work because I am not worth anyone time.

    I literally alone. Can't go to anyone because there's nothing wrong with me. Oh well.

    1 comment
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    Celebrate with me!

    I thought this day would be very discouraging because I was not feeling well enough to go to church (highlight of my week). I was wrong. I'm celebrating all the things I COULD do today. I chopped vegetables for lunch & dinner, ate lunch BY MYSELF, unloaded the dishwasher, loaded it, hand washed 6 dishes over the course of the day, and even cooked most of dinner. I was even able to eat all my dinner without having to lay down. Only my fellow #Spoonies can understand how great a celebration this deserves.
    #MyalgicEncephalomyelitis #MECFS #CFS #InvisibleIllness #celebrate #Fibromyalgia #positive #encouragement

    1 comment