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I wanted to share this poem with you all. It was written by Heather Pearson, who has become a dear friend of mine. Her daughter has suffered ME for many years.


It's just in my mind THEY say,

I've invented it all in some strange way.

Pains, high fevers, exhaustion of flu,

was it all in YOUR mind when suffered by you?

For you, one week, flu is over,

For ME it rolled on into weeks, months and years,

Disappearing from life, down a river of tears.

A virus inhabits each cell,

Consuming who's ME and making life hell.

Enduring symptoms, cruel, intense,

given no answers that make any sense.

Some cannot swallow,

fed by tubes – indescribable pain, no interludes.

23 years lived with guilt and despair,

since first I sat in the \"Expert's\" chair.

\"School Phobic,\" Psychiatrist's explanation,

Leaving me with humiliation.

Verdict inept, wrong sentence, wrong label,

To sit at a desk or do gym, unable.

How can this be, bewildered and floundering,

when recently awarded a cup for Best All Rounder?

Injustice surrounds this thing called ME,

Dismissed, no compassion or empathy.

Bizzare diagnosis, full of intrigue,

endless theories emcompassing ME.

Most common of all, yes you have guessed –

Malingerer, lazy, so very depressed?!

No more therapies left to try,

Of positive thoughts, my mind has run dry.

Pacing and tracing each step of the day,

strive to do life in a different way.

Talking to counsellors, family, friends,

Exercise, vitamins, diets galore,

so tired of trying, but can I try more?

And what of the many children,

Out of school, forgotten, a shell.

Five years old, dysfunctional – yet so clever,

Imagining their own little hell?!!

Most friends long gone – so bored with ME,

Need to find strength, have to break free.

Do they believe that this is my choice,

Bound in a prison, no freedom or voice?

And would THEY cope, with so little hope,

of regaining this person called ME,

Trapped in a vacuum of ridicule, disdain and stolen identity?

Politicians, Consultants, Doctors, PLEASE acknowledge ME,

and thousands of others in Society.

We still hold on to our fading dreams,

But just ask that you HEAR our SILENT SCREAMS.

Confusion, Great Sadness – Please Enlighten ME God.

Is ME real,

Or is it ME that's just odd?

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8 Replies

  • Posted

    Heather should get that published in a magazine.

    So glad you got it posted Katie. thank you for sharing it with us. :D

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  • Posted

    I found it very moving when Heather read it to us at an ME get together.

    I hope none of you find it too depressing. Do bear in mind that when Heather's daughter first had the illness very little was known about it.

    Heather and her family are wonderful people and a group of us spent a very happy day with her yesterday. Thank you Heather and Michelle.

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  • Posted

    Oh Katie,

    That was very moving, and although it is very sad, it can not be called depressing. It was very nice for your friends to 'share' such a very intimate and personal part of their lives with others. It really should be published and distributed in the medical profession as an insight into the affect this illness has on peoples lives.

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  • Posted

    I wish there were people like that in my ME group. Can't really imagine getting close to any of them. they depress me too much. sad
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  • Posted

    Katie that was lovely, it makes you stop and think. A child most loose an awful lot, compared to us older people. We have had some kind of life and fun. I would love to share that with my support group will you ask your friend it the would me alright. Like you I feel lucky to have a good supportive group. Iwas not able to go last month but will hopefully will make it a week on friday.
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  • Posted

    Lou, I know Heather would be only too happy to share it. If you want to send me your e-mail address, I'll gladly send it to you :D
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