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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Writing as Therapy: My ME/CFS Story

Discussion in 'Phoenix Rising Articles' started by wdb, Nov 14, 2013.

  1. RosieBee

    RosieBee

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    Thank you Jodie for writing about your experiences. So much resonates with me. I lurk and read a lot here, frustrated at being unable to put down my thoughts and feelings and join in the conversations. I am grieving the loss of my faculties, as a biological researcher my work was my mind, but it is all trapped inside unable to be expressed coherently.

    I compensate a lot, but I had to face how bad things have become when I tried for three days to write short directions to my home. In the end I had to cut and paste directions to the sports club near me instead, the words just would not come. Sending emails and texts, I have to save them, edit and re-edit until I can get them to make sense.

    However, some time ago I decided to try putting on paper the thoughts that come to me when I can do it - memories, ideas, stories etc. I just 'download' and don't worry about anyone reading them. So I get pages of these 'stream of consciousness' thoughts, but struggle to find a few pertinent sentences when it is required of me. I presume accessing different parts of the brain for the different tasks.

    It saps my confidence hugely to be unable to express my self adequately in words, spoken or written. Often what comes out is off the mark and leaves me looking foolish and possibly a bit weird! It is not something I see talked about much with ME, probably because it is so hard to verbalise if it is a problem. I am finding the cognitive problems as much if not more debilitating than the physical ones. Thank you for your fascinating insight into your progress with writing and how important it has been to you.
     
    SickOfSickness and rosie26 like this.
  2. Jody

    Jody Senior Member

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    RosieBee,

    I am so sorry to hear of all the loss you have suffered. I can only hope that it helps to hear from someone who also used to be unable to comprehend or express a whole sentence at one time and who has recovered to the point of being able to write, converse and ... think. It had seemed to me at one time that I would always be trapped in my mind without being able to use it. I had despaired and given up hope of ever being even a shadow of my former self.

    The symptoms that had me bound and gagged were enormous, for a long time. No improvement of any kind for a long time, and the only changes were more loss. But even from this depth of deconstruction, return, whether a little or a lot, is possible. I am hoping that this will happen for you. Don't give up hope.

    Your post was very coherent. You expressed yourself beautifully.
     
    RosieBee, SickOfSickness and rosie26 like this.
  3. RosieBee

    RosieBee

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    Ooops sorry Jody, I spelt your name wrong! Thanks for the compliments and the encouragement. It's vital that we share when things improve, so I very much appreciate hearing your story. Bound and gagged, really does describe how it feels. I made a good recovery after the 1st ten years and the knowledge I did so well after being so ill keeps me going through this latest setback. More power to your pen!
     
  4. Jody

    Jody Senior Member

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    Think nothing of it RosieBee. People spell my name wrong all the time.:) I'm glad to hear you've had some decent recovery yourself. And thanks for your encouragement.:)
     

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