spoonie problems

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    TV Show / Movie That Best Describes Your Chronic Illness Life?

    I’m going with Steel Magnolias—not because I have Type I Diabetes, but because of the journey it depicts. Cutting my hair short due to chronic illness ✔️ making hard choices because of chronic illness ✔️ going to hospital because of my chronic illness ✔️ having to consider that I might die young(ish) from my chronic illness ✔️

    And there’s that scene where Sally Field rages and howls at the injustice of her daughter being taken away from her because of chronic illness which speaks for itself. I also find some hope in the sense of community that Shelby has around her. I certainly don’t have anything as great as that in my everyday life, but I have a supportive husband and have a Mighty community in you all ❤️

    What’s your Chronic Illness Life TV show or movie choice? 🎥

    #Movies #TV #Netflix #netflixandill #ChronicIllness #Spoonie #SpoonieProblems #TheDisabledLife #Fibromyalgia #ChronicPain #MyCondition #MyalgicEncephalomyelitis #DistractMe #MightyTogether #MightyQuestions

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    The Autumn Of My Years

    Frank Sinatra famously sang in “It Was A Very Good Year”—a survey of his life of sorts—observing that it was a very good year when he was 17, and again at 21, and 35. Later the days grow short and he finds himself in the autumn of his years. Frank doesn’t share with us what age he is, but it’s 2022 and I’m 42, and I feel that I have reached the autumn of my life.

    I am rooted in my bed. I can stretch my limbs as far as downstairs maybe once, twice, a day. I manage to water myself about twice a week, but even then, my trunk groans and creeks with the effort. Most things that I enjoyed when I it was in the summer of my life, have lost their lustre. And like the autumn tree, I have begun to shed my hair.

    My branches held onto my leaves as long as possible. For that I cannot fault them. The rings of decay from the physical—and emotional—stress that were forming unseen inside me just become too many, and without my awareness. I saw countless doctors, all of whom failed to identify the rot that had set in, declaring me a mystery with my inverse T-waves, shaking limbs, falling leaves, and general failure to thrive. Finally, after two emergency room visits, a hospital stay (2 out of 5 stars, do not recommend), I finally saw an endocrinologist after a two month wait. He was confident that I had most likely gone from a state of hypothyroidism to hyperthyroidism without knowing it, for at least a year. With all the stress this imbalance of hormones placed upon my body, my hair started to break and then fall out.

    So now I am in the literal autumn of my years.

    The forecast is hopeful in that with the right treatment, most of my hair will grow back. And, after having weathered an unrelenting storm for the better part of the past year, my body just wants to hibernate. I am grateful that we are approaching winter, which makes sleeping all day feel like less of an indulgence. But I think about my hair loss and how for the past two months I have been lost for the right words to talk about it… particularly in the absence of a diagnosis.

    There are things I can tell you though.

    I can tell you that even though I couldn’t walk, developed alarming peripheral neuropathy, and needed a wheelchair, the thought of losing my hair scared me more. Despite developing what the doctors repeatedly referred to as “concerning” cardiac symptoms, my concern remained with the loss of my hair and with each parting strand, a part of my identity felt at risk. I can tell you that after being admitted to hospital for observation, I became even more afraid when my body hair started to fall out. Making each trip to the bathroom into a turbulent storm of anxiety, grief, and depression, as my body continued to shed more leaves.

    This being a major outward sign of my condition, every day of increased hair loss made me feel like I was ever closer to being visited by the famed hooded logger, and thrust into the great wood chipper. And no Friends like Pheobe, Monica, and Joey to save me.

    As I fixated on my hair loss, I learned many things.

    I learned that there are all sorts of potions that you can buy, that promise to help regrow hair. There are wigs… so many wigs. But the choice really only comes down to two questions. “Can I pull off this radical new look?” Or, “if I cut this wig in a certain way, will it make me look like I did before?” Thyroid related hair loss apparently means any hair that does grow back, might not be the same colour as before. So that’s kind of like a present to look forward to, only it’s unlikely to arrive by Christmas. A full head of medium length hair apparently takes two, maybe three years to regrow. In that respect at least, I feel like I will be like a sapling again, with literal tufts of juvenile hair sprouting between what remains of my established leaves and locks.

    I can tell you that in addition to the emotional pain, hair loss hurts, quite literally. It hurts to pull on it, and my hair band falls out often—I just don’t have enough to bunch together anymore. So I’ve invested in cancer hats. Only I don’t have cancer, so I also feel like an invading alien species. And of course derogatory as the term is, it is accepted that cancer patients are “brave”. The only thing worse than this enforced bravery is that there is no accepted lexicon, or field guide for what I am.

    But I can tell you how I feel.

    I feel like the lonely tree in a forest that doesn’t look like, or feel like, I belong with the others. I’m not quite sick enough to be offered any support to help prop me up, even though every day is a struggle just to hold myself upright. Being my kind of sick is to be that lonely tree in a field that people are happy to shelter under in a storm, but quick enough to cut down at the first sign of disease.

    And I do not know when it will be spring again.

    But I hope that when that day finally arrives I will rush out into the wilderness and hug every tree I see. Even more so in winter—for I will know what it is like to be bare, and suffer from a lack of kindness or care.

    #HairLoss #Hypothyroidism #Hyperthyroidism #GravesDisease #Grief #Loss #Depression #Loneliness #ChronicIllness #Alopecia #MyCondition #Anxiety #Stress #MentalHealth #MightyTogether #SpoonieProblems #Selftalk #Selfimage #Selfesteem #PeripheralNeuropathy #Neuropathy #WritingThroughIt #Disability #Homebound #ChronicFatigueSyndrome #Spoonie #Hope

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    🏁 ‘Slow’ is better than ‘No’! 🏁

    When you’re living with chronic health issues, regardless of whether they are physical, mental, or both, have you noticed how much pressure that you put on yourself to make as much progress as you possibly can? Like more progress will somehow ‘fix’ everything and make everything better? Like the more progress you make demonstrates how much you want to get better? Like if you’re not making enough progress then you’re somehow not making enough effort to get better or that it means that you’re somehow failing in your journey? It’s something that I have started recognising in myself, and I have started to realised that the more I push myself to make as much progress as possible, the worse I actually end up making things. And I’m sure that I am not the only person who does this to themselves. How many times have you pushed yourself so hard to make as much progress as possible but all you actually end up doing is causing yourself more stress, more pain, and more setback than progress? It’s so easy to loss track of the small victories, and we don’t realise that making SLOW progress is actually better than making NO progress at all, or, even worse, setting yourself further back than you already were. I know it’s not easy, in fact I don’t think that I have come anywhere close to achieving this revolution but it’s time that we start going a bit easier on ourselves and realising that it’s important that we recognise that the ‘small’ wins, the littlest progress, IS enough, and sometimes even more than enough!
    #MightyMinute #52SmallThings #CheerMeOn #CheerEachOtherOn #MightyTogether #MentalHealth #ChronicDepression #Depression #Anxiety #Disability #FunctionalNeurologicalDisorder #FND #JointHypermobilitySyndrome #JHS #ChronicIllness #ChronicPain #Grief #ChronicFatigue #SpoonieProblems #Treatyourself #EnjoyTheLittleThings #CelebrateTheSmallWins #PersonalRevelations #MiniVictories

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    Been hanging around for a while… #Fibromyalgia #hypermobileehlers-DanlosSyndrome(hEDS) #coeliac #Bronchiectasis

    Hi I’m Caroline and in the UK. I’m not exactly new here, I’ve been hanging around for months, reading a few posts and stuff. I’m currently having an 18 month long flare up which is making it really hard to function. About 12 years ago this wouldn’t have been a major problem but these days I work full time as a teacher. I’m the only one in my family who’s been well enough to work and what with covid and stuff and we have a lot of debt so I’m struggling along trying to do my best at work, while home descends into a filthy, cluttered hole.
    I’m lucky that I have friends who understand how I feel, but I’ll be honest, before this current flare it has been over 15 years since I’d had one and I can’t get used to the permanent exhaustion. It’s really getting me down 😢 #fibroflare #SpoonieProblems #Working

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    I need a packing list

    Hi! I’m chronically ill and it’s looking like I’ll be in the hospital for the fourth time this year and I still don’t have a packing list, if y’all could help me out that’d be great! #Gastroparesis #tubie #SpoonieProblems

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    What was the last WTF moment you had with your health?

    This morning, Mighty staffer Kat had to get blood drawn right from the top of her KNUCKLE. Despite decades of needle pokes, that was indeed a very new experience for her. (And when asked if she’d like to do it again, her answer is, “ABSOLUTELY NOT.“)

    This got us thinking, even if you’re a “professional” patient with a huge list of diagnoses, procedures, and treatments under your belt — there are still moments where you’re like, “Can’t say that’s happened before!”

    What’s your latest WTF health moment?

    😂 P.S. WTF = what the f&^@ for anyone who doesn’t know!

    #MightyMinute #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #Migraine #Disability #RareDisease #ChronicIllness #Spoonie #SpoonieProblems

    Question

    ways to quietly vent/let some feelings out, other than journaling?

    i’ve been so frustrated and upset lately, with both the lack of available doctors and the lack of response from doctors i have seen, other than the select few doctors i’ve been seeing for a while and truly trust. in order to properly function and to be able to deal with the whole finding-new-doctors-that-are-also-practically-nonexistent thing, i know i’ve got to find some healthier ways (healthier than either crying forever or trying to ignore everything) of letting myself vent/feel. but i don’t like journaling as lately it’s been hurting my wrists and thumbs SO much to write. does anyone have some non-movement non-traditional-journaling ideas for how to do this? i really appreciate any ideas out there! sometimes chronic illness is a whole giant whirlwind of physical and emotional stuff! #MightyTogether #EhlersDanlosSyndrome #Dysautonomia #SpoonieProblems #ChronicIllness #WritingThroughIt #MentalHealth

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    Selfcare Saturday

    Good morning everyone! what are your plans for this weekend? or self care ideas? just saw this and thought it would be a great reminder for everyone to remember that you and your health are your biggest concerns.I definitely struggle with Saturday plans and feeling required to participate regardless of my spoons sometimes. The main thing is that, any plans, weekend or not never should mean more than your physical and mental health. Happy Saturday warriors!

    #

    #EhlersDanlosSyndrome #Dysautonomia #MastCellActivationDisorder #ChronicIllness #Anxiety #ChiariMalformation #PosturalOrthostaticTachycardiaSyndrome #funny #Gastroparesis #Spoonie #SpoonieProblems

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    Tortoise Thoughts

    Hello all.
    This is Meldrew, he's my tortoise.
    Sometimes he walks faster than most people can imagine, other times he walks slow, but he always gets to where he is going eventually.
    Some we can feel like the pace we are going is like that of a tortoise, but remember, as long as you get to where you are heading eventually it's all okay. Don't worry about the pace you are going. ❤️ Have a fantastic day everyone.
    #tortoise #pet #Ehlers -Danlos #EhlersDanlosSyndrome #Ehlers -danlos #hypermobileehlers-DanlosSyndrome(hEDS) #HypermobileTypeEDS #EDS #ChronicFatigue #ChronicPain #ChronicIllness #Spoonie #SpoonieProblems #spoonielife

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    Little Bit of Progress.

    I just thought I would share the first strawberry I picked that I grew on my allotment this year.
    Sometimes progress we make or the things we get achieved in a day can feel as small as this strawberry.
    But even something as small as a strawberry can bring happiness 😊
    Keep at it people, and rest when you need.
    💪🏽🍓 #EDS #ChronicIllnessEDS #EhlersDanlosSyndrome #EDSHT #EDSAwareness #HypermobileTypeEDS #Spoonie #SpoonieProblems #ChronicIllness #progress #happy