1. Click here, Guest, and read the 'News in Brief' post for w/c 15th July.
    Dismiss Notice

Mirror: I can barely walk and I'm bed-bound 23 hours a day - M.E. nearly killed me

Discussion in 'General ME/CFS News' started by Kalliope, Aug 19, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    2,054
    Likes Received:
    21,196
    Location:
    Norway
  2. Trish

    Trish Moderator Staff Member

    Messages:
    13,611
    Likes Received:
    74,564
    Location:
    UK
    Good article told entirely in Jessica Taylor Bearman's own words. A glimpse into Jessica's experience of very severe ME and an introduction to her book, 'A Girl Behind Dark Glasses'. I hope it pushes up sales of the book, especially to people involved in diagnosing and treating pwME.
    Well done @jayletay, and thank you.
     
  3. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    879
    Likes Received:
    5,357
    Generally it’s a very good article, helps to raise awareness.
    “● The effects of M.E. are devastating enough to leave 25% of patients housebound or bedbound. For moderate to severe patients, living with M.E. is like living with late-stage cancer, advanced-stage AIDS, or congestive heart failure for decades.”

    Good “facts” too

    Nit picking I dislike the “forgotten to know how to walk” language, I know that’s how professor Findlay used to describe it in the rehabilitation explanation - forget, relearn - but it makes no sense to me.
     
  4. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    4,391
    Likes Received:
    29,285
    Even though it may not make sense to you does not mean it makes no sense to some PwME; ME affects different people in different ways. My wife (the one with ME, not me) described exactly this to me a good few years ago now. She has real trouble walking: has to walk slowly, and always has to look down at the ground where she is walking - cannot hold her head up and look ahead. And when I asked her about this, she told me it was like she had to learn how to walk again, as if she had lost the ability to do it automatically and unconsciously, but instead now has to consciously think her way through each step.

    Not getting at you @Cinders66, but just noting that ME takes people very differently.
     
    Indigophoton, Gecko, MEMarge and 6 others like this.
  5. Webdog

    Webdog Senior Member (Voting Rights)

    Messages:
    1,532
    Likes Received:
    10,329
    Location:
    California
    It makes sense to me. ME has at various times stolen functioning that I've had to later relearn. Such as losing the ability to do math or to speak in complete sentences.

    Doctors roll their eyes when you tell them, though.
     
    Last edited: Aug 19, 2018
  6. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    4,391
    Likes Received:
    29,285
    I have the greatest respect for the medical profession in so many ways, but it does seem to come with its own special portion of arrogance.
     
    Indigophoton, Kalliope, Trish and 6 others like this.
  7. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    1,660
    Likes Received:
    10,401
    Location:
    Cornwall, UK
  8. Tia

    Tia Established Member (Voting Rights)

    Messages:
    95
    Likes Received:
    849
    Great article. Her strength and resilience amazes me. What an achievement to have written this book and to follow it up with PR like this :trophy@:trophy@
     
  9. hellytheelephant

    hellytheelephant Senior Member (Voting Rights)

    Messages:
    478
    Likes Received:
    2,507
    A very good article- an amazing young woman.
     
    rvallee, Indigophoton, Barry and 3 others like this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,114
    Likes Received:
    26,233
    Location:
    UK
    Kalliope and Trish like this.

Share This Page