Holiday Season ME/CFS Style — With a COVID Twist

Photo of cat looking out window.

By Jody Smith

I have a bad history with late November and the month of December, ever since I first got ME/CFS 28 years ago. Some of that has to do with the shorter daylight hours in my hemisphere, but a lot of it is wrapped up with the encroaching Holiday Season.

December plays host to a multitude of holidays, holy days and celebrations. Many of these are filled to the brim with excitement and anticipation. Fabulous! However, there is a flip side to all that excitement and anticipation. A mountain of work and planning and running around is usually necessary to pull off the Big Day, no matter which one it is.

I write about Christmas because that’s the one I’m familiar with. I’ve had a lot of Christmas seasons over my lifetime — more than six decades of them. I don’t remember the first few, and the next few are pretty hazy. But by the end of the first decade I can remember most of them in some detail.

“Holiday” Season? Really?

Looking back it is quite clear that the humorously named “Holiday Seasons” that were most crammed with work and planning and preparation for me were when my children were small. My husband Alan and I have five kids and at Christmas time, things were hectic!

There were Christmas pageants and parties and family get-togethers. There was money to sweat over and count repeatedly. Then we’d pour it out like a torrential river, because after all, there were trees to purchase and put up and decorate, presents to buy, special foods to get in, special dishes to prepare.

All of it was wonderful. All of it was exhausting — especially once ME/CFS began to make its presence felt, as it has done for 28 Christmases. I am fortunate that in recent years it hasn’t been so bad. As long as I stay within my energy envelope, I am doing alright. I just have to remember that in this season my envelope is smaller.

Stay Inside that Envelope!

Resting within that envelope is key. That means, this time of year afternoon naps are a thing again for me. It means, taking breaks more often, and handling holiday tasks over a period of days rather than polishing them off in an afternoon. It’s a nuisance and a drag, but I know I’m more fragile this time of year, and it’s the only way to avoid a Christmas with a Crash.

The feeling of vibrating, and of thoughts not getting all the way to completion, of breathing being just that touch laboured or … short somehow, have returned after a summer’s hiatus. Christmas-y things like decorating a tree, wrapping gifts, addressing a few cards, take me down a shaky path — literally. This is true even when I limit myself to 20-minute forays.

Still, this regression into ME/CFS symptoms is a mere shadow of the nightmare they used to create for me and my family. I have done some healing over the last decade or so, thank goodness.  I’m certain, though, that I do better in recent years in large part because Christmas is much calmer than it was with a house full of kids. (Sorry kids!)

Less work, less planning, less running around for it all. But of course there is also less excitement and anticipation in a quieter household. Gotta say, it’s less fun now. But it’s also fair to say, I’ve needed the break.

There were years when the cognitive fog, exhaustion, paresthesia … all these symptoms and more would begin to re-emerge in the last days of November and ramp up throughout the whole month of December till I was barely functional on Christmas Day. It would take weeks, sometimes months, before I would feel semi-human once again.

ME/CFS Makes It All Harder

Is December hard for you? Maybe you’re staggering under the load of expectations and traditional duties of having too much to do for too many people — by ME/CFS standards.

Or maybe you have the reverse problem. There is nobody there.

Nobody to buy for or cook for, and also nobody to take care of you, to share a holiday with you. Maybe you are alone. And the burden you carry is the isolation and loneliness during a time when the culture trumpets out far and wide that everyone is part of a big happy family, and all of them are banded together in a sentimental and satisfying glow.

And you are not.

Well, we do know that this legendary togetherness is a myth for most. We realize, too, that even some people who are surrounded by loads of people for the holiday season would gladly be elsewhere, away from a crowd of people — or maybe just away from those particular people. And that may include some sufferers from ME/CFS.

Add COVID-19 and Stir

And then, of course, there’s COVID-19. This year, many families who normally would be glued to each other will be sticking to their own households. The holiday meals will not be spent around long, crowded tables groaning with holiday dishes. The floors will not be littered with wrapping paper and gift bags after the children and grandchildren have torn into them.

This will be true of my household at Christmas time. Alan and I will spend it with our son who lives with us, and who also has ME/CFS.

Most of our children and their families live far enough away that we wouldn’t be able to see them anyway. Even without the complications of COVID-19, we do not travel distances, and that is down to ME/CFS. Just can’t pull that off without a crash, and I don’t mean the car or airplane.

For years, much of our family togetherness has been virtual, through photos, videos and other technological miracles of the day.

One daughter’s family lives only half an hour away and normally we would spend an afternoon and maybe a meal together on December 25 or 26th. But not this year. And that is thanks to COVID-19.

If the weather is mild enough (it could happen where we live) we might meet in our front yard, not touching our grandchildren, not putting out treats. Not exchanging gifts we’d just touched. Presents were shared by mail earlier this month.

We know we will be extremely fortunate if we can have this much no-contact togetherness and there is no guarantee it will happen.

Your COVID-19 experience may vary considerably from mine. Depends on the country you’re in. In my country it even depends on the province and county you live in, as to what is permitted and how much sickness is around.

So Many Are Alone

On top of all that, your experience may also be powerfully affected by whether or not you have anyone to help you, to shop for you, to protect you. I am fortunate in that I have a husband who does all of these things for me and our son.

I don’t go out. I don’t shop in stores. Alan does no-contact grocery pickup and handles all in-person shopping. We are able to have our needs met. We don’t have to worry about whether we will have food, or a warm house in the winter. I am able to live a pretty functional life, and he protects my ability to have this. He makes sure everything that needs to be done, is done.

But maybe you aren’t able to take care of your basic needs. Buying food, preparing it — forget those things, maybe you can’t get from one room to another. Maybe the foods your digestive system can handle are few or nonexistent. Maybe you are plastered to your bed, and getting food to eat is a major challenge every single day. Maybe you don’t have anyone to help.

Holiday Season? That joke of a misnomer stopped being funny long ago for people with severe ME/CFS. In many instances, the strategy is just to keep one’s head down and keep breathing till it’s over. And keep on doing it long after, as well.

What is this time of year like for you?

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Some of Jody’s Other Articles on This Topic:

On the Absence of Light and ME/CFS

ME/CFS and the Change of Seasons: How Does This Affect You?

How Do You Handle Autumn?

Happy Anniversary You’re Going to the Hospital : 2004

Image by Юлия Зяблова from Pixabay


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