spoonie problems

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    Chronic Migraine awareness

    Today I am featured as blogger on Chronic Migraine Awareness website. Please go support them as we try to raise awareness about these poorly understood and researched conditions.
    chronicmigraineawareness.com/2023/03/07/mitas-story

    #chronicmigraine #ChronicMigraineSyndrome #ChronicVestibularMigraine #Migraine #MigraineBrainFog #MigraineWithAura #VestibularMigraine #migraineawareness #ChronicPain #Pain #ChronicIlless #Raiseawareness #ChronicMigraines #ChronicHeadaches #OccipitalNeuralgia #Dysautonomia #Fibromyalgia #ChronicFatigue #Spoonie #SpoonieProblems #spoonielife #Support #resilience #creativecopes

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    We want people to feel less alone.

    My friend and I host a Podcast called Creative Copes. It’s a labor of love- for ourselves, our own journeys and the compassion for others. We hope it becomes an aid for people in similar situation as us. We also have this idealistic approach of trying to end stigma and raise awareness about these conditions life has thrown at us by openly talking about them.
    We set out to share our personal stories and how we creatively cope; with humor and with sprinkles of scientific studies that we have looked up.

    We want YOU to feel less alone.
    Honestly, we all want to feel less alone on this windy road that’s is chronic illness.

    You can find us on Instagram @ creative.copes and on any listening platform just search up the name. Listen in, subscribe and message us. We would love some conversations with like-minded people.
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    #Podcast #ChronicIllness #ChronicPain #Pain #Fibromyalgia #MyalgicEncephalomyelitis #Agoraphobia #Anxiety #SocialAnxiety #CopingTips #Endometriosis #MentalHealth #spinalinjury #OccipitalNeuralgia #Dysautonomia #ChronicVestibularMigraine #Migraine #Community #Disability #youarenotalone #Spoonie #SpoonieProblems #spoonielife #CheerMeOn

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    🩻 I’m back! 🩻

    Sorry, I’ve been a bit absent recently! I hope you didn’t think I’d forgotten about you all? You’ll be glad to hear that my chiropractor fixed me so now I’m back (pun intended 🩻🤗🤣)!! My body may be held together by Kinesiology Tape but it helps when you can have some fun with it! 🤷🏻‍♀️😂 I’d be lost, in agony, and falling apart, without my amazing chiropractor!!
    👏🏻😍😘💝
    #functionneurologicaldisorder #FND #fndwarrior #fndaware #fndhope #fndhopeuk #fndaction #FNDAwareness #JointHypermobilitySyndrome #Hypermobility #HypermobilitySyndrome #HypermobilityWarrior #JointPainWarrior #Jointpain #JointPainRelief #JointHypermobilityAwareness #ChronicFatigue #EhlersDanlosSyndrome
    #ChronicPain #Chronicpainwarrior #ChronicPainRelief #ChronicHeadaches #ChronicMigraines #chronic #ChronicIllness #Painrelief #chiropractic #chiropracticadjustment #dryneedling #dryneedlingtherapy #Acupuncture #kinesiologytape #kinesiology #kinesiologytaping #ktaping #ktaped #SpoonTheory #Spoonie #SpoonieProblems

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    This may sound crazy, but I think I can “use” more #spoons

    So, I am looking for some advice. I think I am able to add more spoons because I believe I can do more. I have been using the standard 12 spoons. But I have more energy to give. While it has been well with the 12 spoons, I know I can “do” more. I require a structure like this. I just need an adjustment. How would I go about assigning spoons to a task? I know this sounds weird but w am looking for suggestions. Thank you!
    #SpoonieProblems

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    Is unpacking considered cardio? 👀

    When unpacking your bag from holiday trip leaves you with -10 spoons. #SpoonieProblems #Holiday

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    Rest Can Be Triggering

    If you have spent a lot of time in hospitals or institutions or forced to lie in bed, rest can be very triggering. When you spend long periods of your life forced not to do anything, rest can feel like a punishment. Medical and psychiatric trauma are real.

    At this time of year, we can get a lot of messaging about rest and productivity that lack nuance. So this post is a shoutout to all of our sick, crip, mad, and disabled community out there who struggle with finding Crip space for rest. You are valid too.

    ID: Rest can be triggering. Background photo of mountains against the sky on a full moon night.

    #Disabled #bedbound #Bedrest #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Spoonie #SpoonieProblems #SpoonTheory #Holidays #PostexertionalMalaise

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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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