When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
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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. alex3619

    alex3619 Senior Member

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    When we cannot visit there is a tendency for some to see us as not interested as well. This has happened to me.
     
    rosie26 and Ren like this.
  2. whodathunkit

    whodathunkit Senior Member

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    Jody, sweetie, Congrats on your new Grandbaby. I hope the stars come together for you and you can get to see her, some how, some way.

    On a lighter note, there's something quite energizing about smelling new baby head. ;-) My hope for you is that you can get that baby head "fix" soon. Even if it's quick and doesn't last long enough, it's "Ahhhhhh..." while it's there.
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    @Jody I am late to this thread but also want to congratulate you on your new grand baby. I was racking my brain trying to think of a way you could see her. But I know you will some day soon and that time will be amazing for you.
     
  4. Jody

    Jody Senior Member

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    Alex,

    I know what you mean. It has happened to me as well ... still happens.
     
  5. Jody

    Jody Senior Member

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    Thanks whodathunkit,

    Yes, babies smell SO good! even when they don't.:) I am hoping for a head fix at some point.:)
     
  6. Jody

    Jody Senior Member

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    Gingergrrl,

    I so appreciate you racking your brain for my benefit.:) But have a care, don't strain that ME/CFS brain if you can possibly avoid it. I am thinking the little fam will probably make their way to us some time in the next year. And since my daughter has maternity leave for I think the next 9 months, maybe it will be in less than a year, to work with her time off.

    Meanwhile, the photos and facebook posts are getting a real workout.:)
     
    Gingergrrl likes this.
  7. soxfan

    soxfan Senior Member

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    Jody-- I can relate to this post totally except for the fact that I am lucky enough to have recently moved to the town my son and daughter in law live. I (3 weeks ago) just became a grandmother to a precious baby girl and was also fortunate enough to be in the delivery room when she was born.
    My husband and I moved 9 months ago from the home we had lived in for 34 years in order to be closer to them. At that time they were not expecting but we moved because we could no longer maintain a big house and yard.

    I do hope our loved ones understand that we would be there if we could but I know in my heart that because I look healthy and they never see me at my worse then it is hard for anyone including family and friends to "get it". They don't see me when I am crashed and unable to move....

    Your article was wonderful and I want to congratulate you on your granddaughter....
     
  8. Jody

    Jody Senior Member

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    Soxfan,

    Congratulations to you too, Grandma.:) My granddaughter is also 3 wks old.

    You are indeed lucky to be so close to them. Good planning on your part!
     
    soxfan likes this.
  9. golden

    golden Senior Member

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    Reflexology for babies is always a lovely help to them...

    If the parents like that sort of thing too, with their approval and permission, maybe that is something a New Granny could arrange to make up for not being able to be there.
     
    Jody likes this.
  10. john66

    john66 Senior Member

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    my wife and I are expecting a child in about 2 weeks I have CFS and she does not. Very excited and nervous at the same time all the scans indicate he is healthy but the financial realities not a good picture. Applied for all sorts of state and federal aid but nothing has come through so far. Ssdi is in appeal, along with medicaid etc...I tried a commission based sales job for a few months, the reality is I can work an hour or two before crashing. Some days, bed bound. Just do not have mental or physical staying power. Car is stuck in driveway. No cash to fix it. Some days.........
     
  11. Jody

    Jody Senior Member

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    John,

    I so understand. The stress in a situation like what you're dealing with is crushing. I have been there, and know that I could be there in the future, since we don't have any financial reserves or nest egg. It is awful to have a vehicle that doesn't run or can't be depended on. And knowing you need to find a way to bring in money does not change the fact that you are sick and aren't able to do it. It is not a matter of character or priorities, it is just a hard fact of life.

    I wish I could give you something helpful in a practical way, which I know is what you really need right now. All I can do is tell you that there have been so many times in rearing our five kids when I just didn't know where to turn. We have somehow always managed -- had to skimp on things like dentist, groceries and clothing that met our standards, ... you know the kinds of things I'm talking about.

    Our kids are grown now. One has ME/CFS and is living at home with us. The rest are married or in longterm relationships and are independent. They all did without, and they know they did. They were in on all the financial crises and the worries. Yet they don't seem to hold it against us, though my husband and I struggle with feeling like we let them down. But they are well-adjusted, and loving people who love us despite it all.

    I know you are strong, and doing everything you can, to the detriment of your own health. I hope some opportunities and help will come your way. You deserve help and support.
     
    helen1 likes this.
  12. Misfit Toy

    Misfit Toy Senior Member

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    Yes, I have missed weddings, friends, family, concerts (that I have spent too much money on) and so much more from this illness. I have lost thousands of dollars for having to cancel a vacation or come home from a vacation where I got sick.

    But....it still doesn't compare to not seeing a grand-baby, so for that I am so sorry. That is a true sorrow, but I hold out hope that you will one day. I have to believe that for you and for me. That there is a cloud with a silver lining.
     
    Ambivalent and ahmo like this.
  13. Jody

    Jody Senior Member

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    Yup, we've missed a passel of them, haven't we Misfit Toy.

    But I agree with you. I am hoping to be able to make a visit, or they might be able to come see us. And I agree that there has to be a silver lining. Many silver linings. And we will find them because we will never stop looking.
     
    Misfit Toy and ahmo like this.
  14. Ambivalent

    Ambivalent

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    I can relate as well. The times I have forced myself to go to an event I usually have a great time but pay for it big time after. What is the best thing to do? Grit your teeth
    and smile at these functions? Hard to explain to others sometimes why you are not
    on the dance floor at a wedding.
     
    Jody and Misfit Toy like this.
  15. barbc56

    barbc56 Senior Member

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    Jody, I have been meaning to read this but you know how that can be. I got sidetracked and then I was trying to find it under blogs, so wasn't even in the right place to look.

    Late or not, I just want you to know this was very touching. We can all relate to what you are going through and it's hard. No way around that.

    Thanks for writing this.

    Barb
     
  16. alex3619

    alex3619 Senior Member

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    The scene: Christmas day at my brother's house, some time in the 90s. The event: Christmas lunch (its summer here) with relatives having flown in from the UK. Me: stuck in an air conditioned dark room, not joining in.

    This does not in my experience foster understanding. It fosters judgement.
     
  17. Jody

    Jody Senior Member

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    Thanks Barb. :)
     
  18. maisiE

    maisiE

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    Jody my heart goes out to you.
    God bless, maisiE.
     
  19. Jody

    Jody Senior Member

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    Thank you maisiE. I appreciate that.:)
     
  20. PurpleHaze

    PurpleHaze

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    I can totally relate to your post, Jody! I have been sick for over 20 years but functional enough to be able to work until almost 6 years ago. All of my family live close to or over 1000 miles away so the only way to see them is by plane. 1) can no longer afford the airfare because it has skyrocketed and my income has declined substantially. 2) The elephant in the room.

    Everyone expects me to be the vibrant person I was and do, visit and cram more than I can possibly do. Sometimes I'm blessed, maybe I pray harder for those times?, and I can manage up until my trip and even throughout it, if I am careful but then crash for weeks afterwards - but that is worth it! Sometimes, however, I crash during it and that is SO not fun!

    A few years ago my hubby and I planned a trip to Massachusetts (from Texas at that time) to visit most of our family. We enjoyed a Memorial Day cookout and then planned to go to the little town's parade the next day, which used to be a tradition for us when we lived there. Well, the morning of the parade, I could barely wake and was fraught with pain. I tried really hard to manage getting up, dressed, etc. but failed miserably. Even if I could have dragged myself there; the crowd, noises, smells, and color would all have been over-the-top too much! When I called my daughter to tell her we wouldn't be able to go, she became terribly mad at me. Evidently she would not even have bothered to go, had we not decided to the day before; but now my granddaughter was looking forward to it so she had to go.

    Can you believe she held a grudge for the next 2 years?! I am so glad my prayers were answered and she finally came around. We are almost as close as we used to be. Maybe that scar will never leave her. Me? I cannot afford to let my hurt feelings scar me.

    I do thank God that he created smart people who invented the internet, computers, Skype and now FaceTime, and every bit of technology that allows us to interact with our faraway loved ones as much as we possibly can! Blessings to you all!
     

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