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Home Alone for the Holidays

Discussion in 'Spirituality and ME/CFS' started by gracenote, Nov 19, 2009.

  1. gracenote

    gracenote All shall be well . . .

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    Hi all,

    I'm wondering how you cope with the holidays. Thanksgiving (for us USA folks) is next week, Christmas, Hanukkah, Kwanzaa will follow in about a month, and then a week later will be New Years.

    My health always takes a downturn beginning in mid-September, so starting with Halloween in October until my birthday in February, it is one major event after another that I'm too tired to participate in. It was really hard when my children were young and at home — you just can't skip the holidays with kids — and now that they're gone I often just do a Bah Humbug act and let the days go by.

    But . . . Days seem longer and lonelier when I know that friends and family are gathering without me. On the other hand . . . what a relief not to have to feel the added pressure, the added expense, and the added inevitable crash afterwards.

    So how are the holidays for you? I'm interested in how you cope or maybe even flourish during these times.

    Knowing I will be alone next Thursday, I want to prepare myself to be present on that day for both the grief and the gratitude that I feel in my life.
  2. RestingInHim

    RestingInHim Realist

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    gracenote,

    might i suggest you let a select few friends and/or family know that you need a visit on each holiday. even if you are crashed, having someone come by would mean a great deal. i realize this requires vulnerability, but often others who want to encourage us don't know what to do or what we need, so we must tell them...and not be afraid to ask.

    i'm praying you won't be alone on these holidays.
  3. Victoria

    Victoria Senior Member

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    Gracenote,

    I think it's very difficult to find that balance between longing for some company & taking pleasure in the silence & solitary state of being.

    About 3 years ago, I chose to give Christmas Day with family a miss, & spent most of the day in bed. It was very, very quiet in my block of flats & I listened to the silence with a feeling of, "not quite being of this world".

    I felt strange.

    Odd, because most of my time outside work, is spent alone. But in my solitary evenings & weekends, I can always hear people walking past my flat (I'm on the ground floor & my flat is next to the thoroughfare everyone in the block uses), or talking to each other. I hear doors banging, the communal washing machine chugging away next to my flat front door.

    On that particular Christmas Day, all was silent. I couldn't even hear traffic on the main arterial road at the end of my small street.

    Yes, it was a very strange day.

    At 5.00pm, having missed me at the family Christmas luncheon, my younger brother & partner & 10 yr old neice rang the doorbell & arrived with a present & stayed exactly 30 mins.

    It was perfect.

    A visit to say "Hello" & "Happy Christmas" and keeping the visit very short (to express understanding of my exhaustion & fatigue).

    I had worked back late in my office for most of days leading up to Christmas & was totally & utterly exhausted. I suppose if I'd had lots of strong black coffee, I could have made it to the Christmas luncheon, but I didn't do this. I was self indulgent & just lay in bed most of the day "listening to the silence".

    And this year, when I've got 10 days off work will be spent mostly in solitude again.

    I like my solitude and my lonesomeness.

    I am often alone, but rarely lonely.

    (but I do have a busy job with phone, email & person to person contact, so the solitude as home is a welcome contrast).

    When I had "enforced" solitude in the 6 weeks after my back surgery in June 2008, I admit that I got bored & fed up. But I wasn't really lonely. I just got fed up with being unable to do anything. I couldn't sit for more than 15mins because of the lumbar surgery & couldn't walk far (because of the numb foot & the risk of falling over & ripping the 3 layers of stitches in my lower back). I couldn't garden, or clean or have a soak in a hot bath (a morning hot bath relaxes my stiff muscles & relieves some of my pain). I couldn't see friends (I only have a few friends) who were working or away. or just plain tied up with their own lives. Unbeknown to me, prior to my surgery, my best friend's husband was also in hospital for bladder surgery (unexpectedly).

    I can't imagine how some of the forum members cope with years of isolation, day after day, week after week, month after month.

    If you were used to a busy social life & plenty of family around you, it must be soul destroying to change your life so drastically & lose people contact.

    Victoria
  4. Jerry S

    Jerry S Senior Member

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    Home alone

    Let's see. I've been home alone for the last seven Christmases. I've even developed my own traditions.

    I always watch the Alastair Sim version of "A Christmas Carol" and a tape of an old PBS dramatization of "A Child's Christmas in Wales."

    I have some special treats and some sort of "roast beast." I play Christmas carols on the piano. It's very peaceful, which suits me.

    I like to think I avoid all the commotion and keep Christmas well.
  5. Hysterical Woman

    Hysterical Woman Senior Member

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    Gracenote

    Hi Gracenote,

    Thanks for your post discussing what we all do on holidays - a particularly difficult time for many of us. I believe that this year (after the announcement of the XMRV "connection") it might be even harder. Like many of you, I have been both overjoyed in this positive news. We hope that it offers us the opportunity to be treated in a more fair way (not just just as crazy or lazy), and will possibly lead to some treatment options.

    However, I have also found that since WPI's announcement, I am going thru move grieving for losing more than 18 years (I know for others it has been even longer!) of my life to this insidious disease. It is a particularly bitter pill to swallow, thinking that if the CDC had not abandoned it's research on a viral/retroviral cause that we all could have avoided at least some of this. Still, I am grateful for the new research and try to keep that in perspective.

    Holidays have been difficult for me since I don't have any immediate family left except for my sister who believes that I am nuts and need to be in a psychiatrist's office at least twice a week. I sent her the initial press release from WPI with no response from her at all. She doesn't live in the same part of the country, and that is just as well. For a while my neighbors across the street asked me over to their house for holidays, but that stopped abruptly a couple of years ago and I am not sure why.

    In any case, this year for Thanksgiving, I will be housesitting for some people I know. It is a fairly easy task in that they have a huge fenced in yard and all I have to do is let their two adorable dogs out to run and let them back in when they bark. Other than feeding them, that is the only thing that is required, so I can sit back and watch their big screen TV with lots of channels. When I am feeling well enough to walk around the yard with the dogs, they are so happy, running back and forth and wagging their tails with excitement.

    While I am there, I do have access to the internet and will be checking to see what people on the Phoenix Rising's forum are up to.

    So, Gracenote, I hope that your holidays are not too bad. If you are out here on Thanksgiving, please continue to give us your wise and caring thoughts.

    Take care,

    Maxine
  6. margib

    margib Senior Member

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    gracenote & everyone,
    you're all welcome at my house, but I have 2 small children, so it's a lot of commotion on Christmas morning. Christmas has always been very stressful for me as an adult, & even though it was wonderful for me as a child, I have chosen (and there is a strong community here for this) to really diminish the importance of it. The pressure is waaaaay to much, & this year, I'm broke (I'm hoping my kids won't notice too much!). I couldn't hold on to many of my decorations. I don't cook, except for my kids, & they don't like holiday food (probably because we don't eat sugar/gluten/dairy!). Same goes for Thanksgiving, which was a big holiday for me growing up. Again, I don't cook it, my kids won't eat it, & I'm not sure how to properly honor the native Americans. Sooo, my focus with both is on giving to others & on relationships with people, not things (that I stress to my children)--still hard to do with kids, but they love even a little Christmas tree. I am very serious that anyone is welcome to stay with us & if I can, I will visit you. I live in central Texas & can usually drive as many as 3 hours. Let the peace & the true rest begin.
  7. gracenote

    gracenote All shall be well . . .

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    the same twenty-four hours

    Margib,

    That is such a lovely offer. Texas is just a little bit far for me, but your welcoming invitation reached all the way into my heart.

    And thank you Jerry S for reminding me that I can have my own traditions. I often think that it's "not a big deal" because it isn't "really" a big deal — these days have the same twenty-four hours as other days. But then I find myself with unexpected feelings and sadness. I not only didn't get to join in with others, but I inadvertently left myself behind, too, because some part of me doesn't really believe that these are just "the same twenty-four hours," and I need to take care of that.

    What has made it feel heartbreaking for the first time is that my three children and my three grandchildren will all be together, and I never get to see them all together. Ever.

    The lowest I've come physically was four years ago after a long difficult treatment unrelated to ME/CFS. I had lost a lot of weight and I felt like my life-force was draining out of me. I felt so weak that I feared I wouldn't be able to care for myself. I truly felt like I was dying. I asked my doctor to hospitalize me, but he couldn't find a way that Medicare would cover it. Instead he "practiced" on me some new acupuncture skills he had been learning which seemed to turn things around just enough to let me catch my breath. The next day was Thanksgiving. My plan was to walk down to the end of the block. Just that.

    I think of that now. That walk, just down to the next street, which held such hope and expectation.

    This time of year the light slants through the trees casting interesting shadows. The multi-colored leaves on the ground are all askew lending a hint of wildness and change. Green shoots are already beginning to show themselves after the bit of rain we've had. The days getting dark so early encourage rest and renewal. The air seems vibrant with meaning.

    I will walk down to the end of the block again, this Thanksgiving, and feel heartfelt gratitude that I am alive — yes I am alive — and that I am here to see the beauty of life all around me.
  8. Koan

    Koan Be the change.

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    Gracenote,

    Can your family Skype you? Can you have a virtual presence?

    It's one thing to spend the holidays alone but quite another level of loss when we miss things like a rare gathering of the entire clan.

    I'm sure you have considered every conceivable way of getting to them in person and found it impossible. I do hope you considered everything, even things that might be a bit inconvenient for the kids, but I'm sure you did.

    So, is there a way you can be there via your computer? Skype is wonderful for that. Do you have a camera? The cameras are not very expensive, apparently, if you don't and your kids are sure to be able to talk you through setting it up and getting a skype account. Skype is free, I believe.

    Then, they can put their laptop on a chair with a hat on and it can be Mum! You don't have to be talking all the time and they don't have to be talking to you all the time but you can see what's going on and be there and shout to them to move you when you can't see the action.

    I know you still miss out on the food and the hugs but, and this is important, you can fake a bad connection and "go home" instantly when you need to. ;)

    Is that a crazy idea? I bet it isn't, you know.

    Peace to you from another person who will be with you in spirit - and here - for the holidays.

    Koan
  9. Koan

    Koan Be the change.

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    Don't forget what the Buddha said: Be a bother to your children for in being bothered they will be blessed.

    What do you mean the Buddha never said that?!

    :p
  10. margib

    margib Senior Member

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    One more thing, gracenote: my kids have cousins who live here, too; all 3 of my mother-in-law's kids live here and we almost NEVER get together at the same time...has nothing to do with CFIDS! It's just too complicated & emotionally taxing on everyone! I know that sounds horrible, but it certainly works for me. Even my mother-in-law realizes it gets to be bananas. And I, too, will never take walking (or sitting up) for granted, after not being able to. Especially because my children are so young. Thinking of you all,
  11. gracenote

    gracenote All shall be well . . .

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    motto for the new year

    Koan, it's complicated in so many ways, including an ex. And I could not physically tolerate even that much activity via Skype, though thanks so much for the suggestion.

    But becoming a bother to my children sounds like a good spiritual practice for me and a great new year's resolution. Too often I pull back because I don't want to be a bother.

    Wise Buddhaism by way of Koan.
  12. Koan

    Koan Be the change.

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    Be a Smiling Bother!

    No-one minds a cheerful, smiling bother.

    I am a Smiling Bother and I tell the children they don't mind; I just never tell them I'm a bother: that is my business. It's a bit like the Chesire Cat -- all they see is the smile.

    Be a bother and a blessing - you owe it to the kiddies.

    ;)
  13. cgstar4

    cgstar4

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    holidays

    good topic!
  14. gracenote

    gracenote All shall be well . . .

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    a bother and a blessing

    Maybe that is part of what makes this so difficult. I can't be a "cheerful, smiling bother." That is not how this illness impacts me. I can be content, I can be thankful, I can be gracious, but I can't be smiling. It is apparent by looking at me, by talking with me, by trying to engage with me that I am struggling mightily. My children were two, four and seven years old when ME/CFS wrecked havoc with my life. In addition, I was not in a supportive marriage (to put it gently). There is grief on all sides that we have yet to find a language for. Children must grow up and find their way in the world and they've had to declare some independence from the chronicity of my health in order to become themselves.

    And now there are the grandchildrenthree lovely boysone, three and seven. I've been able to spend one-on-one time with the older two occasionally and it both blesses my heart and exhausts me. And the grief is there that after all these years, just like when their parents were kids, I am still too tired to really be present in their lives.

    I am blessed that I have lovely, sweet, wonderful children. And now I have grandchildren. I miss the chance to be a greater part of their lives. There is no mal-intent at all. We just haven't figured out how to dance together.

    I can't be a "cheerful, smiling bother," but I can continue to learn how to be a "bother and a blessing," and I DO owe that to all the kiddies, both young and old.
  15. Koan

    Koan Be the change.

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    You know, Gracenote, I never should have said "cheerful". Even as I wrote it I knew it was wrong. Cheer is a brittle thing anyway. It's there, it isn't, it doesn't really matter. And, there are some who find it inherently annoying so, truly, never mind!

    I do think smiling is important, though. Not so much for the observer but for the smiler. When people learn to meditate they are often told to wear a little smile. It is not a smile born of happiness, it is just a physical upturn of the lips. It signals the brain which responds even though it is just the muscles moving.

    I think it changes everything if we take a minute, just a minute, whenever we think of it, to close our eyes and very gently smile and breathe. Not a grin, just a slight upturn. Sometimes when I am in a state and try to meditate I think: "It's not working! It's not working! It will never work again!" Then I realize I forgot to turn up the corners of my mouth and I do and it works.

    But, please forgive the carelessness that I showed when I wrote cheerful because I really did know it was wrong and I left it. I shouldn't have.

    Anyway, the practice of smiling notwithstanding, a loving bother is a blessing. We withold ourselves from those who love us in order not to bother them. That serves no-one and it certainly doesn't make smiling any more likely for anyone.

    Thank you for staying with me through my clumsiness.

    I am sure you will learn to dance and that grief will let you go.

    peace to you,
    k
  16. gracenote

    gracenote All shall be well . . .

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    that serves no one

    I feel like I hijacked my own thread! :):):) Thank you all for your responses.

    And thank you Koan. You have traveled far with me today while lending me your ear and your heart and your attentiveness. You have provided a lovely container for me to acknowledge and express my grief. Even though you tipped into the realm of being just a tad bit of a bother (cheerful, anyone?), you have truly become a blessing to me. I'm staying with you and I might just try being a bother to you. (I am not a stalker!) And now I'm smiling. AND cheerful.

    Peace out,
    Gracenote
  17. Koan

    Koan Be the change.

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    Ah Gracenote,
    We have our little secrets, don't we.

    And, you will keep me when I am a bother - I trusted you would!

    You have made me laugh!

    Bother me any time you like,
    Koan

    ETA and I suspect you are determined not to practice smiling with me despite the way it tricks the brain. Maybe one day. There I go: bother, bother, bother!
  18. gracenote

    gracenote All shall be well . . .

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    off topic and liking it

    I keep seeing people end their posts with ETA. I haven't known what that meant and have tried to figure it out. No progress with that. So I looked it up at www.acronymfinder.com and came up with some possibilities.

    Most obvious:
    Estimated Time of Arrival

    Probably not:
    Egyptian Tourist Authority
    Embroidery Trade Association
    Embedded Transport Acceleration

    One's I like best:
    Extra Terrestrial Activity
    Elvis Tribute Artist

    Okay, maybe not.

    Please, please, please, all you lurkers who are reading this thread, venture in and offer your holiday thoughts. Home or not. Alone or not.

    Gracenote

    ETA (I think I figured it out)
    Koan, there is no determination not to. :)
  19. Koan

    Koan Be the change.

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    You do make me laugh!

    Egyptian Terrestrial Artist, of course!

    Edited To Add: Night, night, sleep tight...
    Koan
  20. Kati

    Kati Patient in training

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    Holday blues

    I am usually one that doesn't like too much holiday fuss, Christmas has been difficult for me for as long as I can remember- expectations, pressures, all that food, bloated feelings, the gift "thing" the shopping thing- etc... Also being a nurse, I would work Christmas night or the eve, and end up alone anyways- and then people would feel sorry for me for being alone.

    Sometimes it's best to be alone, no fights, no drunk uncles, no embarrassing moments.

    This year it will be different as I will take in the whole year that has been a big disaster, the year I turned 40. The year I got sick. The year I lost my best friend (or perhaps the year she drifted away). The year I spent mostly in my bedroom. The year I spent on the internet.:(. The year I got a big scar on my belly. The year I earned less than 8 grands.

    Nonetheless, I go day by day at the moment. Remembering the things that need done, and keep my hopes higher than level. To me it helps to remember that Christmas is just like any other days, the sun will rise, the sun will set. Maybe it will snow. Maybe the new year will bring better things

    Hugs to all. I will be online, just come and find me!

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