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The Holiday Season vs. ME/CFS

By Jody Smith

pixabay-christmas-boy-windowIn North America, the end of November traditionally kicks off the holiday season which runs till the beginning of January. “Holiday season” may seem to be at best an ironic term, at worst a bad joke, for describing this most taxing of time periods, especially for people who are chronically ill, and often poor and isolated as so many are who have ME/CFS.

In the United States, Thanksgiving pulls the trigger for the holiday season. It’s an occasion that does its best to bring some light and comfort to a cold, bleak time of year. At least, in theory. The reality is often something different, for healthy people and particularly for those of us who are not.

Looking ahead to the long nights of the colder months can be daunting for even the healthy people with real lives. The sense of gloom and isolation can be crushing for those who are sick and without a sense of community.

This can be a really hard time of year for people with ME/CFS. For many it is the worst time of year. Their symptoms may be tougher in the winter and they may be more cut off from the rest of the world because of the harsher weather, as they find it more difficult to deal with the elements outside their front doors.

Being at home all the time when you have no friends or family dropping by — a situation that besets so many chronically ill — can make even the shorter days seem too long and can make the longer nights hard to bear, especially when sleep is impaired. This time of year can make people want to hibernate, to rest… but this scenario is not the least bit restful for those who are lonely, sick and trapped at home, invisible.

And for the chronically ill, the thought of gatherings of family and friends can just add to the pain. The friends and family? For many of us — not there. Who among us has not sat alone, picturing other families gathering for a feast while we sit in an empty house? If you have family who will be gathering at someone else’s home, and you are too sick to go, the silence of your empty evening fills the room and your heart in an even greater way than usual.

Can’t have people over and be able to spend time with them. Can’t accept the fact they’re doing it someplace else without you. There is no winning. No workable solution. And all because your body and brain are too fragile to handle what you long for more than anything else — a sense of normalcy, a feeling of belonging, of security among the people you love. And so often the people who matter to you just don’t understand what you’re going through.

The holiday season can be tough for those who are all alone but it isn’t necessarily a bowl of cherries for those with ME/CFS who have family ties either.

Turkey dinner? Can’t cook it. Couldn’t eat it if someone else cooked it.

So many of us have food issues that if ignored can send us into orbit. For this one, it’s gluten. For the one with FODMAP sensitivities, there’s a bewildering array of foods on the forbidden list. Some are low carb by necessity. Some can’t eat meat. Many of us are dealing with so many neurological abnormalities, or struggle with vertigo, POTS or OI, that eating anything is out of the question as we white-knuckle our way through the ordeal.

In a gathering of family and friends, so often someone with ME/CFS finds themselves needing to hide away in another room because the noise of conversation, music and laughter is too much sensory stimulation. Their ability to carry on a conversation, even to be able to understand words spoken, to be able to put words together in response, is beyond them.

I have had to bow out at such gatherings in my home. Most years, I was fortunate to be able to share the meal, maybe even was able to help cook it. But an hour or so was my limit, and I would have to say my goodnights after a short time, and retreat to my bedroom with a book, or to lie face down, gasping, on my bed. My door had to be closed to reduce the amount of happy noise that would reach me down at my secluded end of the hall.

We’ve all felt the desperation that crushes us when we’re faced with the quandary of how to buy gifts. It’s not that we don’t want to do it. But when you’re too frail to venture into a store on a quiet day, the throngs of shoppers are like a tidal wave.

And then there’s the financial minefield so many of us creep through every day of our lives. During the holiday season, when there are so many things we want to do for those we love, knowing that we can’t because we can’t afford it or can’t get the job done is a constant grief. Feelings of shame, guilt, fear, resentment and anger become a toxic swirl that suffocates and terrifies.

For those who used to love to throw themselves into the hectic flurry of the holiday carousel, this can be a time of unremitting heartbreak. And for those who were stricken by ME/CFS at a young age, that happy experience is one they can only watch as though they are outside in the cold and dark, looking through a window at a scene of warmth and togetherness.

Their families may be so used to them not participating, not having much to say, not giving gifts that bring “Ooh’s” and “Ah’s” from the recipients, that the sick one is left to sit alone in the crowd… or worse, forgotten down the hall in their room, darkened and with door closed.

Did you used to bake cookies for the family? And now you must disappoint them — again. Are there old family traditions that now go begging? Were you always available to help with special events and parties? Now you must play Grinch as you say, “No, No … and No”.

Have you tried to explain to people who don’t grasp the severity of your illness? Do you feel like your words sound like a stream of excuses?

This is what the holiday season hurls at many of those with ME/CFS.

When I joined Phoenix Rising, the sense of welcome and understanding hit like the illumination and warmth that flows out of the open door of a well-lit house into a winter’s night. I discovered that I could talk about anything I felt, anything I thought, and not only would it be accepted, it would probably be met with a sharing, as well as a tending, of wounds from others here on the site who’ve been through similar wars.

Holidays were always busy days on these forums. Those of us who had nowhere to go and nothing that we could do, were gathered around the campfire of our computers, shutting out the gloom by our combined presence.

I could sit down to my laptop depressed or on the verge of tears, and a short time later be laughing with other members as we’d share holiday mishaps and misadventures from the past and not-so-long past. Or I could come feeling blue and stay to feel loved and understood — always a treasure, especially for the person with ME/CFS.

Does Phoenix Rising help you through the dark?

How do you deal with the holidays?

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{ 15 comments… add one }

  • alex3619 November 26, 2013, 7:08 am

    When I sat in a quiet room alone on Christmas day sometime in the 90s, with family from all over the world outside, I was treated as kind of crazy.

    Last year I skipped Christmas entirely, and so had the energy left to enjoy New Years Eve.

  • PNR2008 November 26, 2013, 7:44 am

    I can't even write how traumatic the holiday season is to me these last few years. There is no energy to even attempt to like it even though many years ago I reveled in the festivities. I've seen too much and lost too much to ever think my childhood memories were more than "play acting". The only thing that could save me is to create a good memory like very light travel, good conversation, perfect surroundings, being with people but retreating to my gorgeous suite when I need to rest. How in the world is that going to happen?

  • beaker November 26, 2013, 8:20 am

    The holidays are something to get through, not something to enjoy. My least fav. time of year. A shame.

    I wish it were January already.

  • xchocoholic November 26, 2013, 12:40 pm

    Over the years, I somehow learned to get through this time by
    doing what I could to help those less fortunate
    than me. I'm not capable of much but I always
    put money in the Salvation Army bucket
    and buy an inexpensive toy to give to Toys for

    I'll be having king crab for Thanksgiving and Xmas so
    my holiday meals aren't depressing.

  • xchocoholic November 26, 2013, 3:46 pm

    I forgot to say, imho, it's important to find
    something that puts a smile
    on your face this time of year. King crab makes
    me smile. : ) Giving to others
    either financially or physically can help.

  • Valentijn November 26, 2013, 5:10 pm

    My Christmas holidays have been pretty good since I got sick. We usually drive a couple hours to my fiance's parents' house, which can be a bit rough, but has been a lot better since getting my OI treated. They also let me have the bigger couch to myself, so I can lie down when needed, and keep my feet up all the time. There's also a blanket I can grab when I get chilly.

    My fiance's mom and/or sister do all of the coffee/treats and dinner preparation, so I can just sit there and look cute while trying to keep up with the Dutch conversations if I'm up to it. If I'm not up to it, they won't bother me while I stare into space 😀

    Gift giving isn't as crazy in the Netherlands. We might or might not pick up one relatively cheap gift for each immediate family member that we'll see at Christmas dinner. Last year we got my father-in-law a few microbrewery beers he hadn't tried before, a nice bag of imported coffee for the brother-in-law, and a box each of awesome Belgian chocolates for my fiance's sister and mother.

    I don't think anyone else brought gifts, so it really is a no-pressure situation, which is awesome! More of a matter of doing what you want to do and enjoying it, instead of being pressured to meet certain expectations.

    Dinner can be a little rough for me, because my fiance's parents usually do "gourmet" which is a fairly common Dutch tradition for Christmas. Basically a hotplate with 4-8 tiny pans on it for people to grill their own food at the table. So I get a bit tired out by the reaching and such, but it's very easy for me to avoid the foods I react to. And I can always ask for help if I really need it.

    We stay over at their place, since I'm too exhausted for a drive home by then and my fiance enjoys staying up late and drinking beer with his family. They have a nice bed now that isn't hurty, so that goes pretty well. Though I'm usually in bed by 10pm, while everyone else is up past midnight, so I get lonely in the morning. :(

    I want to make a pumpkin pie to take this year – it's not something that seems to exist much in the Netherlands, so they might have fun trying it. Though I'll get the fiance to help make that before we drive over. And if I don't feel up to making it, no big deal 😎

  • HowToEscape? November 27, 2013, 1:25 am

    No family, and being sick means no friends.
    I've learned to try to sleep through or otherwise blank out the holidays.

  • belize44 November 28, 2013, 1:12 am

    I used to get really depressed over the holidays. Now that I am married, my fiance and I can ignore them together! We are both orphans, and have no family support. Most of his siblings have passed away, and mine don't bother with me anymore. We make good food that is healthy, or he does if I am not feeling up for it. We plan to eat thanksgiving dinner out, so we don't have to cook. We watch old movies. Once I accepted that holidays don't have to mean what the mass media tells us it should, it became easier to shape my own version for myself. Sometimes I light pretty red, green and white candles but no tree and no lights.

  • brenda November 28, 2013, 3:57 am

    Last Christmas Day l got to speak to another human being – a wrong phone number from a woman in California. Otherwise its me and the TV over the holidays with a lousy holiday schedule.

  • rosie26 November 28, 2013, 7:19 am

    If anyone is on their own on Christmas Day or Boxing Day would like a chat, just message me and I will be happy to chat for a bit.:) Hopefully I won't be relapsing !!!! :aghhh:

  • Valentijn November 28, 2013, 7:42 pm

    I'll probably be around here on Christmas day too. We have two Christmas days here in the Netherlands (typically one for visiting each set of parents), and our family affair is on Christmas #2.

  • Hope123 December 3, 2013, 6:51 am

    I am fortunate to have really laid-back family and friends that will do more or less things during the holidays depending on how I feel. I also encourage them to get out and do things I can't do so no one feels bad about anything. For Thanksgiving, pre-CFS, I used to get friends and family together to cook a large festive meal to share. This year, we just ordered the full dinner, all prepared, from a local supermarket. For those who can afford it, there are now places, especially in large cities, that have dinners to fit different dietary preferences.

    For Christmas, since I am not Christian or for that manner religious at all, I like to celebrate the secular values that I believe the holidays represent. Gift-giving also has never been an emphasized tradition within my family. What I've enjoyed doing in the past is sponsoring a child for Christmas; various charities in the US have virtual or real holiday giving trees where you can pick a child's tag with his/her info off the tree and then buy age-appropriate items for that child. This can be clothes, books, toys, etc. As a child, I benefited from such programs so I like to give back when I can.

    There are similar programs aimed at different groups — soldiers abroad, foster kids that aged out and have no family, lonely elderly folks, political prisoners, etc. — to cater to any interest. I like to remind myself that we are not the only group that can feel isolated/ lonely or forgotten during the holidays. Some programs don't require any/ much outlay of money at all; writing someone a nice letter or sending them a card can lift someone's spirits and can be better than any gift. These things can also be done virtually. It's not entirely for the benefit of the recipient either; volunteering has been shown in numerous scientific studies to benefit the health/ mood of the giver as well.

  • alex3619 December 3, 2013, 10:57 am

    If the holiday season vs. ME/CFS were a title fight (boxing etc.), then I think the holiday season would nearly always lose. ME/CFS is just too big and too tough. 😮

  • Valentijn December 4, 2013, 7:35 am

    If the holiday season vs. ME/CFS were a title fight (boxing etc.), then I think the holiday season would nearly always lose. ME/CFS is just too big and too tough. 😮

    It definitely needs to be tag-team wrestling instead … if we've got someone on our side to lend a hand, it's a lot more manageable.

  • alex3619 December 4, 2013, 8:20 am

    How about the Incredible Hulk? That should balance the odds.