Tag: illness

  • Another year, nothing changes!

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    by

    Jane Shaw
    in

    This picture really resonates with me. I hate that I have not been able to work for 20 years. I really want to work and have a purpose and an identity, not to mention an income sense of achievement. Yes it’s nice to have a break from work if you have a job, but a…

  • Time and Tide Waits for No Man or Woman!

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    by

    Jane Shaw
    in

    All through life we are expected to make progress, meet milestones and improve ourselves.  So what do you do when you have an illness that halts progress and self development?  And what do you do when you feel like your life stopped 20 years ago and you are still getting older but not moving on?…

  • What Can I Do?

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    by

    Jane Shaw
    in ,

    What can you do was a question asked on a facebook page the other day.  I answered ” I am limited due to health problems and get so hung up on what I can’t do. It’s much better to focus on what I can do and be proud of what I acheieve, but I don’t think…

  • 20 years and counting!

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    by

    Jane Shaw
    in

    What have you been doing for the last 20 years?  Me I have been busy living with ME.  Here is my latest rhyme. 20 years with M.E, 20 years since things went wrong. 20 years since I lost me, 20 years, it’s far too long. 20 years of missing out, 20 years of feeling ill.…

  • Ode to my Bed

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    by

    Jane Shaw
    in

    I feel like I spend, half my life in bed. We’re together so much, we really should be wed It’s not much fun, with a bed for a friend. Lying there for hours on end, sends me round the bend It sees me at my worst, when I hide from the world. Sees my pain…

  • Winner Takes It All

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    by

    Jane Shaw
    in ,

    Having watched Mamma Mia countless times with my daughter and being lucky enough to go to the show for my birthday, the song Winner Takes It All blows me away every time I hear it, it’s so powerful, full of emotion, telling the story of what it’s like to be left behind, in the case of a…

  • Millions Missing

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    by

    Jane Shaw
    in

    Today marks #ME Action’s, Millions Missing Campaign.  This is a worldwide day of protest for those with ME/CFS. “On May 25th, 2016 #MEAction is global day of action for equality for ME. ME patients, advocates, caregivers, and allies will join together to protest of the lack of government funding for research, clinical trials and medical/public education,…

  • Little Miss Brainfog

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    by

    Jane Shaw
    in

    Little Miss Brainfog lived in a normal house in a normal street, surrounded by normal people. Little Miss Brainfog also looked normal, but had an illness with and extraordinarily long name, Myalgic Encephalomyelitis, which it is easier to call ME. Like it’s name Myalgic Encephalomyelitis is also rather complicated and extraordinary. The illness made Little…

  • Painful music

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    by

    Jane Shaw
    in

    Have you ever notice that songs are usually about some powerful emotion, usually love or loss.Last weekend when it was cold and we kept saying oh the wind is so cold and song popped into my head and have been bugging me ever since, I finally looked it up today it is It’s all coming back…

  • What is the point?

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    by

    Jane Shaw
    in

    I wrote this nearly a week ago, but feel so ashamed it has taken until now to pluck up the courage to share it and I still don’t know if I am doing the right thing. 1am 14th November Can’t sleep again, so upset and overwhelmed with life and possessions.  I am so ashamed and…