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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Facing Christmas With the ME/CFS Community at Phoenix Rising

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 21, 2012.

  1. Jody

    Jody Senior Member

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    Bluebird,

    That had to be so tough, to be sick so young. I'm glad to hear that your family is there for you. I know you would like to be able to do things for them. I remember being in that position for a long time. As I have been recovering, I have been able to begin to do some of that but there is so much ground yet that needs to be regained. Just trust that your family knows you love them.

    My son has ME/CFS, he's 22 and has been sick since he was 16. I know it chafes him that he can't do more for his family. But I for one am just happy to have him, and I know his heart. I am sure your family feels that same love for you.
  2. Jody

    Jody Senior Member

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    AFCFS,

    I understand that feeling. I know my sick son (age 22, sick for 6 yrs) does too. We have both felt betrayed by all the things we thought about our society and about our extended family -- that in a crisis or a catastrophe that they would be there for us. To find out this is not so is heartbreaking and causes great anger and cynicism -- and understandably so. That they didn't realize the depth of the problems we faced at first is easilty forgiven. That all these years later that has not changed, not so easy to forgive. It has caused us to turn our faces away from the backs turned to us, and look for understanding and relationships elsewhere. Like here.
    AFCFS likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    I was readin the responses here again and thinking just how incredible our responses are as they are so so like way out our experiences of what life is like for us. What's kind of scary..is that this is really our daily life too.

    I was just thinking it would be great if someone did a book filled with shared experiences like that..eg it could be called something like "Throu Our Eyes. Living with ME/CFS" What christmas is like to us etc etc . so the real world can more easily see how it is for all of us. The responses here are so well written and gut wrenching.

    Maybe a group book could be a combined fundraising and advocacy idea for PR?? a book and then sold throu the website and other places with all the money going to ME/CFS. I once read an Aspergers book from my library in which half the book was made out of online quotes on their experiences from Aspergers people on different life things, which people in a forum put together.
    alex3619 likes this.
  4. alex3619

    alex3619 Senior Member

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    I did not join in with Xmas at PR because I joined in my usual scheduled internet support on second life. I did something different this year though, I cancelled Xmas dinner, and stayed in for a quiet day. As a result I was not totally wiped out at New Year and enjoyed a small New Year gathering a lot more.
    BEG and taniaaust1 like this.
  5. Crux

    Crux Senior Member

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    Thanks Jody;
    Fortunately, things went okay with the visit. I've come to understand my mother's behavior from a different point of view now. After observing the change in my own thinking and behavior since I became so ill, I can see that many of her comments are the expression of her own condition. ( They're not always rational.)

    Another great help for me has been my husband, who has become my advocate. It's taken years for us to develop this. ( I did have to take enormous efforts to bring this about. It started with self-respect. )

    I hope everyone has survived this holiday season, unscathed.

    I'm pretty tired, but glad that I haven't crashed. It's surprising, because there were some negative stressors. One of our elderly cats passed away while we were gone. It was a heartbreaker not only for us, but our caretaker, (niece), and the veterinarian. ( tough job, that)

    I realize again that the holidays are still a part of the "life goes on" ; it's just more crowded and intense, with too many expectations.

    I admit that it's a relief to return to our own routine. There's alot of peace to be found in the day to day rhythm.
  6. Jody

    Jody Senior Member

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    I know what you mean about the relief of routine. I am looking forward to watching some of the TV shows that bored me a month or so ago, simply because they are part of the routine. :) Having some quiet and walking my dog are great pleasures at the moment.
    Crux likes this.

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