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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. Mercy

    Mercy

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    I am so sorry, jimells for all hat you are going through. I really hope you finally get your disability decision and can find a way to make it financially. My decision took 3 1/2 years and I thought that was a long time but 5 years is absolutely horrible!

    Forbearance and jimells, I fear I was a little misleading in that I didn't explain better. Some of my family would visit me but I have been too sick for years to tolerate any company at all. Even phone conversations are too much for me. Plus my Mom is ancient and lives in an assisted care facility. She badly wants to see me but can't. It breaks my heart to know that she has to live with he knowledge that she will never see her daughter again, just as I will never see her again. My one sister does drive 3 hours to see me, but she can only stay for about 30 minutes. She does it a couple of times a year anyway. So I do have more emotional support than so many others. But other members of my family don't understand or believe how sick I am so I understand that pain, too. I just learned that my 10 year old niece doesn't remember me and her older brother just unfriended me on Facebook. That hurts. I feel as if I am slowly being erased.

    Anyway...I wish the best to all of you whose lives have been interrupted by this horrible condition. It helps to know that others understand but it also pains me to know that others are as sick as I!

    Oh, and Ahimsa, I really want that pi pie. It looks deliciously nerdy.
     
    ahimsa and merylg like this.
  2. Banksy

    Banksy

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    god to be atheist sometimes haaaaaaaaaah
     
    merylg likes this.
  3. ahimsa

    ahimsa Senior Member

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    What's funny is that I found several examples of pies online that were decorated with pi (either symbols or digits or both). But this photo looks to me like a cake (a cheesecake is a cake, right?) not a pie. So, that made me laugh even more. ;) I like cheesecake more than pie.
     
  4. Jody

    Jody Senior Member

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    I have been reading this thread all along, but haven't posted till now as I've been dealing with a teensy relapse since just before Christmas and have been trying to pace myself. So far so good. :) Will now begin responding to everyone who talked to me here.
     
  5. Jody

    Jody Senior Member

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    Thanks Sasha. This time of year, these types of thoughts are in most chronics' minds I think.
     
  6. Jody

    Jody Senior Member

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    Living with ME is only for the courageous, I think, Enid. If we didn't start out that way we must become that way whether we like it or not. I hope you had a good Christmas, and that plenty of rest was part of it.
     
  7. Jody

    Jody Senior Member

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    It sounds like you've been able to deal with Christmas, in a way that works for you, db. I'm glad for that.

    Our kids come over off and on over a few days, which is as much busy-ness as I can handle. I used to send out dozens of Christmas cards before I got sick, and really enjoyed the whole kids and Christmas hectic thing. After I got sick though ... well you know. I don't send out Christmas cards anymore. We have really streamlined things over recent years to make things more manageable and less likely to cause a relapse. This year we almost made that goal.:)
     
  8. Jody

    Jody Senior Member

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    Hi Crux,

    There are times when a love of solitude can really come in handy. I hope that things went okay with the visit to your mother's. Hard to prepare for such things, people can be unpredictable, even when you have a pretty good idea of how things might go.
     
  9. Jody

    Jody Senior Member

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    Hey Sushi:)

    Trepidation? Nah. I know this topic and I have a fair idea of how many people in our community feel. Some of us have rehashed this subject over the years -- many of us have done it here with the same friends over the years :) -- and for those who have just been introduced to this life, well, it can help to have things talked about in the open.

    A party would have been great! I was not really up to much beyond juggling my kids over the holidays so if there was a party I missed it. But there is no reason we can't have a party whenever we like. Right?;)
     
  10. Jody

    Jody Senior Member

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    Hi Liz

    You were and are by no means alone. Knowing that doesn't make the isolation go away but it helps to deal with it, I always found. I hope your Christmas was a good one.

    Jody
     
  11. Jody

    Jody Senior Member

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    Hi MishMash

    Sounds like you might have been one of the younger ME/CFS folks who have early memories of exhaustion at Christmas. Now, those other holidays are a whole different thing.:D
     
    MishMash likes this.
  12. Jody

    Jody Senior Member

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    Jarod,

    It sounds like you were looking forward to Christmas this year, despite illness. I'm happy for you. :)

    Jody
     
  13. Jody

    Jody Senior Member

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    Christmas stress hasn't squashed your sense of humour.:D
     
  14. Jody

    Jody Senior Member

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    Thanks Tania

    Me too, no Christmas cards this year. Again.

    We have had very thin Christmases over the years, having only a few dollars to spend on each kid ... making stuff (knitting scarves and hats one year for each kid and that was it ... still, at least it was something. but not much fun for a kid).

    I'm glad you found a ride to the family get-together. It can be exhausting but so lonely otherwise. I hope it went well for you.

    Jody
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    We had a party--a call-in, log-in "Go to Meeting" with real voices!

    Sushi
     
  16. Jody

    Jody Senior Member

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    That sounds great.:D I hope it was fun.
     
  17. Jody

    Jody Senior Member

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    Hi Kati

    Good planning on a meal that will do you for a couple of meals, that helps to conserve precious energy.

    You're locked out of facebook? I hope that is temporary. Facebook fills some empty spots for me.

    Best wishes to you.

    Jody
     
  18. Jody

    Jody Senior Member

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    PNR,

    Sounds like a nightmare. I'm so sorry this happened to you.
     
  19. Jody

    Jody Senior Member

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    Jimells,

    That is horrible. What an awful Christmas "tradition" to have to deal with.

    I understand the feeling, I have often been shocked at my own experience, if it hadn't happened to me I would have not believed it was possible. Even with the fact that these things happened to me it still often seemed impossible.

    Feeling betrayed and abandoned is an enormous side effect of being chronically ill. It is sometimes, I think, one of the tougher ones to deal with.
     
  20. Jody

    Jody Senior Member

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    Mercy,

    It is hard to fathom how people can just overlook us and miss the whole point sometimes. Familly can cause a great deal of pain when they act like nothing has happened to us, or like we are somehow not here. The only thing I know to do about that is to turn to the community that understands, like this one.
     

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