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Can You Come for a Visit? My ME/CFS Says No
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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Facing Christmas With the ME/CFS Community at Phoenix Rising

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

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

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  2. Sasha

    Sasha Fine, thank you

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    Great post, Jody - very timely!
    Allyson likes this.
  3. Jody

    Jody Senior Member

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    Thanks Sasha. Seemed like it would be on many people's minds this time of year. Another elephant in the room.:)
    Sing, Jarod and Allyson like this.
  4. Enid

    Enid Senior Member

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    Nice to see Jody - one's whole way of life is so much changed and much courage needed living with ME. Happy Christmas to one and all though lying in bed may be a big part.
    Allyson likes this.
  5. Dreambirdie

    Dreambirdie work in progress

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    Thanks Jody. Yes, the online community definitely helps ease some of the holiday stress. It's a blessing to be able to relate to others in the same boat.

    Lowering expectations has helped me a lot. I usually spend X-mas alone, because I can't be around my partner's family, all of whom stink of a whole assortment of toxic fragrances. Yucko! I don't care for the isolation at all, but I prefer it to getting sick with a major toxic reaction. And honestly, they're not that fascinating to me anyway.

    Last year I did laundry and took a bath on X-mas, and it was actually quite pleasant. We'll see what I feel like doing this year.

    At this point, X-mas is really just another day on the calendar. The days I really feel like celebrating are the days when I feel good, better, or just okay. Those are the days that deserve a REAL party.
    ahimsa, vli, camas and 1 other person like this.
  6. Crux

    Crux Senior Member

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    Thanks Jody;
    I do hope folks here have found a way to manage this holiday time.
    In past years, I would hole-up alone and watch movies or televison. ( Some channels run marathons. A few years ago, there was a " Mad Men" marathon I enjoyed, although it's kind of grim.)
    I admit that I prefer alot of time alone, but there can be loneliness during the holidays, even for us loners.
    If I can have a limited amount of time with company, even if they are annoying, it can be a welcome distraction, in a way. Then I can return to my solace with appreciation.

    This year, my husband and I will travel to see my mother and her husband. I've been trying to prepare for this...don't know how, really. ( thought-blocking, denial, hope) We do have a plan B to quickly leave a bad situation. In the past, I was slow to realize when it was time to leave, or flee. Hope to improve that sense.

    I feel for folks who would like company for the holidays--I'll be thinking of You.
    Allyson and MishMash like this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Jody

    Thanks for the great article--you go right to the heart of it without trepidation!

    Maybe we can have a virtual party here.

    Best wishes,
    Sushi
    Allyson likes this.
  8. Liz

    Liz

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    Thanks, Jody!
    It is always good to be reminded that there are other people suffering, other people willing to commiserate, other people who KNOW firsthand what it means to struggle with ME/CFS. It is good to be reminded that I am not as isolated as it sometimes seems. Merry Christmas to you, too!
    Mercy and Allyson like this.
  9. MishMash

    MishMash *****

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    I hate Christmas, and relish in the role of Grinch. I won't beat around the bush. Yes, I as a kid, liked all the gifts and the candy and and all that crap. But it was such huge adrenal, emotional stress. I would have dumped the whole thing in the ocean at 12. Christmas sucks.

    My favorite holidays: Cinco de Mayo (more tequila, bartender), 420 (don't bogart that!) and April's Fools Day.
    camas, AFCFS, jimells and 1 other person like this.
  10. Jarod

    Jarod Senior Member

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    First year that I've had an understanding of what Christmas is about. Merry Christmas.

    Thank you Lord Yeshua.
    GracieJ and ggingues like this.
  11. Crux

    Crux Senior Member

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    I just hope I won't receive a visitation from 3 ghostly figures...that would be the Dickens.
  12. MishMash

    MishMash *****

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    Sorry, I forgot to add Mardi Gras. Celebrating the beginning of Lent is very important to me. In the French Quarter of New Orleans. Just so nobody thinks I'm anti-religious or anything.
    Jody and Dreambirdie like this.
  13. Allyson

    Allyson *****

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    Not that there's anything wrong with that !
    peggy-sue, Jody, Wayne and 1 other person like this.
  14. taniaaust1

    taniaaust1 Senior Member

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    Thanks Jodie.. have a good xmas to you too.

    This year, its another year where the xmas cards just arent going to go out. Ive learnt a long time ago not to worry if those cards just dont get out.

    This year.. my mum, dad and grandmother wont be getting any present at xmas as I didnt have the time (short of time with the strict pacing and resting I need to do) to collect the family photos and turn them into calenders as I'd planned to do for xmas. Hopefully I'll get them done by Easter and they can have presents there instead. Im celebrating thou that Ive managed to get the xmas presents (brought things throughout the year when I saw things when I was doing basic food shop) for my nieces, nephews and grandchildren so I will have those done (thou they dont always end up getting wrapped).

    Today after a couple of weeks of trying to sort it out, II finally found a family member who can pick me up and take me to the family xmas do (so I wont be sitting here home alone, upset due to not being able to get there).

    I hope everyone else has at least an okay xmas this year.
  15. Kati

    Kati Patient in training

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    This year i am skipping Christmas all together. I am pretty sick these days, have to assemble my next meal over 2 days (shepphard pie)- there should be leftover until Xmas.

    Some days are worse than others when it comes to feeling isolated and lonely. Being locked out of FB has not been helpful. It can get quite painful, but this too shall pass. I will try to phone an old friend or family every other day, when able.

    Best wishes to everyone.
    MishMash likes this.
  16. MishMash

    MishMash *****

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    Thank you Allyson. In America, Christmas still does have the comfort of religion. We seek solace in the ritual. We are in fact a spiritual people! Each season, we genuflect before St. Macy's, St. Nordstroms, St. Sears, and St. Apple, the patron saint of a peculiar, but militant sect. And the din of their messages resounds out of every television, radio, and is plastered in every inch of advertising space. We most be nearing an end of times, (I mean the Mayan apocaplypse was a bust) because the call to these holy temples of modern worship keeps getting louder every year.
    Kati and jimells like this.
  17. PNR2008

    PNR2008 Senior Member

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    I am having a tough time because my house is a cluttered mess and I'm too sick to attend to it. The horrible sin that I committed was saying I wish that I could decorate this year. Well relatives planned a day, I was bedridden, planned another day I was still ill told them to stay away but they came over anyway armed with pizza and dessert and got me out of bed to go up in the attic and hand down boxes of Christmas stuff. "Just direct us and we'll get it done". Yes I directed and directed until the words didn't match with the items I was talking about. After 7hrs, they ate twice asked me 50 questions as simple as where's the knives, can you make me hot chocolate, why does your faucet turn on so hard?.They finally left after doing many things but the fact remains they left my house a mess, the tree incomplete, boxes out and a few that never made it down. Now I ask you, should a manger be sitting out without any figures around it like someone yelled "cut"?
    Needless to say I barely moved for three days and when I complained about the state my body was in, I was told to appreciate what was done and suck up the pain and quit cursing so much, they were tired too. So there you have it, a big family with little understanding and another Christmas spent in bed. Don't bet
    on them coming back to put the mess away, one took 10 days after the "visit" to check on me.
  18. jimells

    jimells Senior Member

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    Horrible. It's really hard to understand how people can be so inconsiderate, brain-dead and tone-deaf. What's so hard about "You just lay on the couch and we'll take care of everything"?
  19. jimells

    jimells Senior Member

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    Thanks, Jody. This really hit home for me.

    I did receive a "Christmas present" from the local DHHS office: I'm being kicked off Medicaid, again. This is an annual occurance with these dirtbags. In the end they are forced to relent, at huge physical and emotional cost to me. This is in addition to dealing with the bankruptcy petition, a lawsuit to seize my trailer home, an upcoming Social Security disability hearing (after waiting five years), unpaid property taxes, a leaking roof, no transportation, and extreme poverty.

    When I look back at all that has happened, particularly in the past three years, it's hard for me to believe I'm not making this stuff up. How could all this happen to one person? If I lived in Samalia, this would be business as usual. But I don't. I live in the richest country in the world, every day I'm told "We're Number One!!! The Geatest Country Ever In The History Of The World!!!"

    Number One in what: cruelty? callousness? greed? destruction? death by drones?
    vli and MishMash like this.
  20. Dreambirdie

    Dreambirdie work in progress

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    Jimelis--I am so sorry for all the crap on your plate right now. Just awful!

    Sometimes life just sucks, no matter where you are, and patriotic cheerleading certainly doesn't help.

    I wish you much better days than this.

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