Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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What Very Severe ME is like: Stonebird

Discussion in 'General ME/CFS News' started by Countrygirl, Oct 28, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    Greg has just posted this, and I thought it is worth sharing as it may help some who know little about ME, realise just how unpleasant it is for so very many.

     
    Last edited: Oct 28, 2017
  2. boombachi

    boombachi Senior Member

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    Makes me very grateful not to be in this pisition.
     
    Countrygirl, Mel9, *GG* and 1 other person like this.
  3. Cheesus

    Cheesus Senior Member

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    The feeling of very severe ME/CFS is one of being continually tortured for years on end. In my case, it felt as though I was drowning, but always able to gulp down just enough air to stay alive. The daily struggle was a side of the human condition the vast majority of people will never experience, and we should all be very grateful for that.

    I fortunately did not experience the pain or headaches described above, but the rest of the post rang true to my past experience.
     
    ghosalb, MEMum, Countrygirl and 5 others like this.
  4. Wolfiness

    Wolfiness Activity Level 0

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    I have very severe ME and personally I find this extremely purple prose embarrassing and not altogether helpful.
     
    Mij likes this.
  5. Misfit Toy

    Misfit Toy Senior Member

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    Purple prose? Huh?
     
  6. Misfit Toy

    Misfit Toy Senior Member

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    This is so sad. I have had many of those symptoms yet never at once. I was diagnosed with CFS in 1989. For me, it was exhaustion and depression with hormone problems right away. Sometimes I wonder just what the hell it is I have besides everything. It's never ten things, it's usually only one I keep hearing. Sigh..
     
  7. Wolfiness

    Wolfiness Activity Level 0

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    I should add I have immense respect for Greg Crowhurst and Linda Crowhurst's courage and greatness of heart and they are clearly suffering a lot more than I am. I'm just not sure depictions of subjective suffering change anyone's mind if they already think we're solipsistic drama queens.
     
    Last edited: Oct 29, 2017
    PinkPanda and Mij like this.
  8. Jessie 107

    Jessie 107 Senior Member

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    When someone has severe M. E., is it a gradual decline to get to that point? Or does it happen quickly? I just wounder why some people end up severe and some stay the same.
     
  9. Solstice

    Solstice Senior Member

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    There's really no telling. Some deteriorate very rapidly, others plateau for a long long time. The best one with M.E. can do is stay within their limits, take plenty of rest and hope for the best.
     
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