Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Washington Post article on Toni Bernhard's latest Psychology Today column (Oct3/16)

Discussion in 'General ME/CFS News' started by waiting, Oct 3, 2016.

  1. waiting

    waiting Senior Member

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  2. Old Bones

    Old Bones Senior Member

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  3. waiting

    waiting Senior Member

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    Yes, I had the same impression but perhaps -- giving her the benefit of the doubt -- it was meant to be a supportive comment (the ever-present narrative of ill/disabled people who "push through" and "triumph against the odds").

    Otherwise, it comes across as disparaging.

    However, there is also seemingly no awareness of the severe PEM payback Toni undoubtedly endures after writing.

    Thanks for posting the link to Toni's column.
     
    Luther Blissett and Old Bones like this.
  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    USA
    From the Psychology Today article
    What I Wouldn’t Change If My Health Were Restored Tomorrow
     
  5. valentinelynx

    valentinelynx Senior Member

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    This quote from the article caught my eye,

    "And she would never, never abandon her “pillow arrangement.” After years of spending too much time in bed, she has figured out exactly what pillow of what shape she needs to place where in her bed to get a comfortable night’s sleep. Indeed, it sounds like a useful thing to learn."

    I, too, have a specific arrangement of specific pillows that allows me to sleep comfortably - supporting my limbs so they don't fall asleep or start to ache from fatigue from being in an unsupported position. I've had maids make odd comments about my odd pillow needs in hotels, because I take a pile of pillows whenever I travel so I can make my nest.

    The most disease-specific thing about my sleep pillow needs, I think, is that I have to have my arms supported so no muscle tone is needed to keep them in position, or they start to ache. I can't sleep on my side, because my lower hip bone will hurt and my upper leg will start to ache from being unsupported. I need one pillow under each side my back to support my back muscles and arms, one under my knees to keep strain off of lumbar/sacral region, one under my feet, one under my upper back and at least 3 under my head. I no longer understand how normal people sleep with one pillow! I need a minimum of 8, preferably 9 or 10!
     
    zzz, Valentijn, Webdog and 1 other person like this.
  6. Valentijn

    Valentijn Senior Member

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    I call it my nest as well. Very naughty fiance likes to flop on my nest and get scolded :rolleyes:

    I have to sleep on my left side, since oxygen saturation drops and heart rate rises in any other position (I can't even lean back a bit for long when sitting on a couch or chair). It can make for a sore hip overnight, but I've got a fairly soft mattress plus a thick mattress topper, and that helps a lot.
     
    valentinelynx likes this.

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