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Can You Come for a Visit? My ME/CFS Says No

Discussion in 'Phoenix Rising Articles' started by Jody, Sep 17, 2014.

  1. Jody

    Jody Senior Member

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    Jody submitted a new blog post:

    Can You Come for a Visit? My ME/CFS Says No

    New grandma Jody Smith shares her frustrations about not being able to visit the new baby...

    My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.

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    The little family lives a province away and we can't afford to make the trip. And that includes not being able to afford the energy it would require.

    People automatically -- and naturally -- ask if we're going to fly out to see them, and I must repeat to one then another that, no we won't be able to go.

    I want to. Boy, do I want to. But even if it was possible to buy a ticket I don't know whether I would be able to make the trip. And I don't know whether they would end up having to take care of me.

    I'm thankful for Facebook, and emails, and pictures. Certainly it is easier to be a long-distance grandparent now than it was for my parents' generation.

    But it's still frustrating. You know what I'm talking about. I'm not just writing this to complain and feel sorry for myself. (Okay, that is one of the reasons.) But it's also to commisserate with all of you who also can't reach the people you love because of the limitations of ME/CFS.

    For those of us who have severe symptoms, our loved ones don't even have to be in another province. Maybe they're less than a half-hour drive from you. But if you can't manage that short trip -- or if you are too ill to have them come to your house -- they might as well be a world away.

    This is such a difficult challenge for many of us. It is not well understood by the healthy world. It's embarrassing to have to say, no, I'm not going to see the new baby. No, I won't be going to the wedding. No, I'll have to miss the graduation, the christening, the reunion ...

    And forget about what other people think. We wonder if our kids know how much we love them. Do they know in their hearts that if we could be there, we would? How much are they missing out on when we can't jump on a plane, or hop in the car and just GO ... ? We all know the answer to that and it breaks our hearts.

    And yet.

    We have to accept our realities, and accept the limitations on what we can and can't do. We tell them how much we love them. We tell them we'd be there if we could. And hopefully our kids know us well enough to believe us.

    We get as creative as we are able. Some of us can Skype without neurological craziness. Some of us can't do that. But maybe we can email or write on Facebook. We can devour photos and click Like, Like, Like. We can lol and send hugs and kisses xoxoxoxo

    And we remind ourselves that despite the limitations our love and past history are very real and they matter, to us and to the people who are so important to us. We hope for the day when we will be able to jump on the plane or hop in the car and go. We look forward to visits from them (those of us able to have company without crashing). We send gifts when we can.

    The old slogan from Bell about phoning being "the next best thing to being there" may ring hollow at times but the telephone partners with the internet as open doors for many of us and we take advantage of them. Because we love our kids, our friends, and though it drives us nuts that we can't go see them, we are lucky to have these open doors.

    Do you have loved ones you miss that you can't go to visit?



    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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    Continue reading the Original Blog Post
     
    Ren, justy, Gingergrrl and 6 others like this.
  2. KayAnne

    KayAnne

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    Not being able to participate in family affairs has been the most sorrowful aspect to these ugly, ugly dis-eases! I so identify and empathize with you Jody. Just want to tell you what an inspiration you have been to me for several years. I have realized that all of my 'best friends' are people whom I have never seen but regularly read about their lives. I am 74, and have had this for over 20 years, who knows how long before diagnosis? Still trying to heal whatever I can, only use natural methods. I have this feeling that if we had been better respected and served and most of all BELIEVED when we first had symptoms
     
    Sushi likes this.
  3. Dreambirdie

    Dreambirdie work in progress

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    Yes, this always sucks.

    I don't have any family I would want to see, but I sure wish I could travel somewhere some time.

    And I definitely wish that you could go visit your new grand-baby. :(
     
    Ren likes this.
  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Yes, I totally relate.

    I also wish you could visit your grandbaby.
     
  5. SDSue

    SDSue Southeast

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    Hey KayAnne,
    I've never met you, either, but I feel instant camaraderie. I'm 53 - housebound for 2 years, sick for much longer. You are me in 20 years! If you can do it, then so can I. Hang in there, my fellow traveler. YOU are an inspiration, too :)
     
    ahmo and *GG* like this.
  6. SDSue

    SDSue Southeast

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    Thanks, Jody, for putting into words the losses we all face.

    If we could, we would.
     
  7. taniaaust1

    taniaaust1 Senior Member

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    This is one loss I find very hard too. Not being able to visit any of my grandchildren and missing out on theirr lives. I'd be a quite doting grandmother otherwise. I'd always looked forward to grandchildren too. I never would of ever dreamed about hardly ever having children about me.

    I find on the rare occassions my sister visits with her children for 2-3 hrs hard, one of those occassions caused me to end up in hospital by the next day. My sister invited me to go and stay with her not long ago cause I was feeling very very down but I had to knock back that offer as I wouldnt been able to handle it, children around me are so so draining. (and I cant drive either).
     
    justy likes this.
  8. liverock

    liverock Senior Member

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    Congratulations Jody!! Hope Mother and Granddaughter are both doing well. :balloons::balloons:
    It sucks doesnt it when this wretched disease prevents us from participating in those important family life occasions.
    Its hard but you can look forward to the moment when the family visit and you hold your new granddaughter for the first time when all the present frustration will evaporate.

    gift_from_god.jpg
     
    Last edited: Sep 18, 2014
    justy likes this.
  9. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

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    I missed my dear friend's wedding after he bought me a ticket to attend. I wanted to be there so much and it was devastating when I had a bad "flare up" a few weeks before, I just knew there was no way I could get on the plane and make a cross country trip that involved driving & camping. This disease is awful!
     
    justy likes this.
  10. Jody

    Jody Senior Member

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    KayAnne, I am touched. Thank you for your kind words.
     
  11. Jody

    Jody Senior Member

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    Thanks db.:)
     
  12. Jody

    Jody Senior Member

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    Thanks Willow.:)
     
    WillowJ likes this.
  13. Jody

    Jody Senior Member

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    That's so true, SDSue.
     
  14. Jody

    Jody Senior Member

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    I'd be that kind of grandma too.:) I'd be flying out to Manitoba to see our new granddaughter, and out to British Columbia to see our two grandsons.
     
  15. Jody

    Jody Senior Member

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    What a great picture, Liverock.:)

    And yeah, you're right. I am pretty sure they'll be able to come visit at some point, and I will love it when that happens. Meantime, my daughter Sarah is really good about posting photos and updates on facebook. I can go with that.
     
    liverock likes this.
  16. Jody

    Jody Senior Member

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    Sherpa,

    Those situations are wrenching, when you had a possible chance to go and then a crash slams the door shut. I'm so sorry you couldn't go.
     
  17. Nielk

    Nielk

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    This was very sad to read, Jody. I know that you have so much love to give and that you adore your family. I always see the beautiful pictures you share on fb and how you post each milestone. I guess, like you stated, we have to learn how to show your love in a different way. I really wish for you that things will turn around soon; both financially and physically.
     
    justy and WillowJ like this.
  18. Jody

    Jody Senior Member

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    Well thank you Nielk. You are sweet.:)

    I'm hopeful that things will improve in all respects. May they improve for all of us.
     
    Nielk likes this.
  19. Nico

    Nico Senior Member

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    This is a heartbreaking illness. I was lucky enough to see my family for a Thanksgiving 2 years ago. It was a very happy day for me, and I hope to relive the experience. That was, however, the first time in years I was able to attend. And, what the future holds is always uncertain. Missing out on seeing family, friends, making new friends even… is gut wrenching. There is no explaining it to healthy people in a way they can understand, I think. I feel like I am letting my relatives down, and myself too.
    I do hope you get to see your grand-baby before too much longer. Congratulations grandma :)
     
    rosie26 likes this.
  20. Jody

    Jody Senior Member

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    Nico,

    I'm sorry you've had to miss out on so much. Healthy people don't understand. No matter what anyone might think though, you know, and we know, that you are not "letting anyone down". It is just the illness you must grapple with as best you can.

    Thanks for the well wishes.:)
     

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