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    Struggling to accept acceptance

    Something that keeps sticking in my mind lately is this idea of Acceptance in the stages of grief. I think that when you are chronically ill, you end up spending months, if not years, cycling through the stages of grief. We Deny. We feel Pain—both chronic, and emotional. We feel Guilt for all the things we can no longer do. We Anger at our mounting disabilities, and we Bargain. Depression that existed before, becomes infinitely worse. Anxiety or occasional Depression becomes something more permanent, that twines itself into your mental and emotional state within this vacuum of lost time.

    We Reflect. On the past, all that we have lost, the limitations placed upon our futures. Chronic illness makes philosophers of us all. And in all this reflection many of us find that we gain new insight into what it means to live, only for this enlightenment to deepen our feelings of Despair and Loneliness.

    Acceptance can be elusive.

    Often, just as you settle into your new normal, some unforeseen event upsets the balance you managed to create out of chaos. We spend days endlessly trying. The illness is trying. The uninformed world made up of doctors, carers, spectators, friends and family, can be really trying. Trying to navigate life with a chronic illness is no easy task in a society that wants us whole, or dying, without much room for anything in between. I always think of “The Beach” when they move their dying friend out of camp, so they don’t have to bare witness to his pain and suffering. In doing so, they relieve themselves of the burden of a prolonged state of grief. Nice for those who are healthy and able to lean out and turn their heads away from suffering.

    Betrayal writ large for those of us who do not have this luxury.

    This is where I have a problem with the idea of Acceptance. I can accept that my health is what it is now, and I understand why my most of my friends have moved me out of their mental village. It’s difficult for me to live with my failing health, and when you don’t know what to say, I can see how it just becomes easier to say nothing at all. What I find Unacceptable is how much support my family, my own blood, have happily accepted from me over the years, and can’t even be bothered to read up my illness as one of my friends did of her own accord. I don’t need anyone to get the words right to show up for me, it can be as simple as showing willing.

    Trying to support someone is supporting someone.

    The other thing that makes Acceptance of my new normal difficult, is that I have yet to get any formal diagnosis. In mid January it will be 6 months since my first trip to hospital. Where my trust that I can rely on doctors to support my health was thin before, it is now almost non existent. Considering all of the many doctors I saw while in hospital, failed to recognise that I was suffering from medication induced hyperthyroidism, so that the thyroxine they sent me home with only made me worse so that I eventually broke out in angry hives one morning after taking it.

    I still have some way to go in finding out what is wrong with me, but while I still have the bandwidth to advocate for myself, I will continue to search for answers. Because I cannot Accept having no diagnosis, and no direction. The only light at the end of that particular tunnel is surely a diminishing one. I shouldn’t have to Accept fighting for my health alone, but I will shoulder it in the face of having no other choice, which I guess is a grudging kind of acceptance.

    I will keep surviving and I will keep trying for as long as I am able to do so. And in the event that I succeed in recovering some of my health, I will be prearmed with the knowledge of how “happy” people will be for me; some may even describe me as being “brave” as if that means something. And I know I can count on at least one person to tell me how well I looked while I spent this time stuck on the platform between the realms of the able and the disabled. Some people just can’t help themselves, and fail to see how this presents as the most backhanded compliment you can pay to any person who has experienced long term physical disability.

    It’s all very trying… but I guess that’s why it’s called grief.

    #Grief #StagesOfGrief #MyCondition #MyalgicEncephalomyelitis #ChronicIllness #ChronicFatigue #Hyperthyroidism #Depression #Loneliness #MightyTogether #InvisibleIllness #InvisibleDisability

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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


    Why am I so sick

    I have hyperthyroidism I never have been 100 lbs on a scale ☹️! People say are you going to break, why are you so skinny, wow your so thin,they think I have an eating disorder ( I don’t love food) I have a weak throat and aamd aperate when I’m drink I. My throat. I sometimes I choke on food it’s so embarrassing. My ex boyfriend would make fun of me(along with beating me physically and emotionally and said I have a black heart 🖤. I’m am a very emotional person and yes I have feeling to ( only human) . I’ve been told I’m very giving, loving,caring, understanding, good listener, and I always help my friends threw some tuff times. I’m there 110% for others put others before my self! I understand everyone has issues, problems, illness ( physical and mental health)! So I hope someone reads this post and just have to say one thing!!! YOUR WIRTH MORE THAN YOU WILL KNOW, JUST KEEP BEING THE POSITIVE AND TOMORROW IS ANOTHER DAY!LOVE YOURSELF and OTHERS ( love is all we need in life)! Xoxo hugs kisses 😌😉☺️😌


    My name is Lindsay. I am in a constant battle to keep my weight up now and I lose clumps of my hair everyday. I’m scared to even brush my hair now. My back constantly hurts and my stomach too. I have arthritis in my hips and knees. My doctors told me they think I have hyperthyroidism and they also told me they have no clue what’s wrong with my stomach. I used to be 169 lbs and in under a month I am down to 131 lbs and fighting to keep and food down and to keep my weight regulated. All of this and some childhood trauma have given me depression and anxiety. I don’t like talking about my issues because I feel like I am putting my problems on people but I have learned on this app that it is okay to talk about it. Thank you for stopping to read this.

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    Life is…..

    I didn’t know how to answer. I have had 3 immediate family members and my 2nd Dad(father-in-law) pass in the last 5 years. Im still grieving the first death which is a younger brother. He’s is about 18 months younger. We are very close. He is in everyone of my dreams. Aggravating me as usual. If he didn’t it wouldn’t be him , but we love each other very much. I can’t seem to progress and move to the next step. Im also dealing with autoimmune issues, Rheumatoid Arthritis, Fibromyalgia chronic pain and fatigue, hyperthyroidism, diabetes, nodules on my forehead but not quite a Klingon. It’s an inside joke , I get chronic pancreatitis, Every joint hurts something weird is going on with my eyes upperlids lumbar spondylitis etc…. I just want someone to understand. This happened at birth born without right ear and can’t hear. Also had extra vertebrae in my lower spine. And still all I want is someone to listen or hear me vent my husband is sweet an does try but he doesn’t understand only those whom have experience them truly get it. My mom understood but I lost her in August 2020. Lost my dad July 4th 2021. He missed mom. My father in law passed on March 15,2022. I don’t hate death my family had some health issues, but their are at peace. Im a spiritual person. I believe in heaven. I miss them so much. Thank you 🙏🏼 for listening. If you need to vent I would be happy to listen #grieving #struggling #neverendingillnesses #SmilingDepression my brother who passed he was 44 is first then me then my youngest brother He was my best friend!💔


    Need Advice

    After being diagnosed as SLE suspect and then UCTD, I got a new diagnosis now, overlapped syndrome. I was positive with RA tests that were not tested 5 years ago and got an SLE symptoms and lab positive too so it was said that I have both RA and SLE. I also have autoimmune hyperthyroidism. It was the first diagnosis I had 5 years ago.

    I am honestly overwhelmed now. I also have infections for more than a month (lungs and kidney) now and in another round of antibiotics.

    Is anyone here have the same diagnosis overlap syndrome? How did you cope with it?

    #AutoimmuneDisease #SystemicLupusErythematosus


    Tired of it all

    I am so over it. I have so much to do and just absolutely no motivation for any of it. I am tired of feeling like crap and even more tired of not being about to get my mess together. Ugh! 😩 #PolycysticOvarySyndrome #Sarcoidosis #Hyperthyroidism #Migraine #Depression