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"One year on: what I would like my friends to know" (October 9)

Discussion in 'General ME/CFS Discussion' started by Tom Kindlon, Dec 3, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    October 9, 2016 Rosa

    She has ME. Also lupus, but this focuses on her ME.

    https://goo.gl/pGFdQI
    i.e.
    https://rosarainbows.wordpress.com/2016/10/09/one-year-on-what-i-would-like-my-friends-to-know/
    ---

     
    Last edited: Dec 3, 2016
  2. SuzieSam

    SuzieSam Senior Member

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    Israel
    This:

    "I have seen how even when we still have so many limits and still are sick, those with M.E actually try twice as hard as the average person to keep living their life, and try so many things in the hope of getting better, but are often only able to achieve a fraction of what others can. Its like living with the functionality of an 85 year old (and for those with severe M.E, that is actually the observed functionality)."

    Really hit home for me. It's such a relief to read things written by fellow ME sufferers. I push myself too hard to care for my teenage kids and husband. I've made myself more ill. Knowing that we're a whole spread out community of people with similar stories is helping me see that I HAVE to stop this. I've tried so hard - it's not a personal failure. I'm very ill. I must rest. They can cope. I'm the one who is suffering, and will continue to do so long after the kids have left home.

    It's so hard to admit, but yes, I'm seriously ill. And my husband just has to cope with the harshness of that fact. And stop laying on the guilt.
     
  3. valentinelynx

    valentinelynx Senior Member

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    Tucson
    My dad is 83, and he way more "functional" than I am! I'd say I'm more in line with my father-in-law, the 98 year old with congestive heart failure...
     
    SuzieSam likes this.
  4. SuzieSam

    SuzieSam Senior Member

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    Israel
    It is SO maddening. In the 9 years I've been ill I've seen several people I know go through cancer, surgeries and chemo, and thankfully return to full lives. I'm so jealous. I'm still here, now 41, desperate to be well, worse than ever.

    As one of the ME doctors says, I think Nancy Climas - I'd rather be HIV positive. And I'd rather be paralysed from the waist down, but otherwise healthy and energetic. Able to be out in the world again, with people, talking, laughing, living!

    I'd swap this for that in a heartbeat.
     
    MEMum likes this.

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