Article Holiday Season ME/CFS Style — With a COVID Twist

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.

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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?

Other Articles:

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
 

Comments

Jody...Hello. You wrote a very good article about the Xmas season and its many expectations.

I'm ahead of you by about 10 yrs. or more and I've found that while some symptoms of the illness have disappeared others have taken their place. Oddly enough, I now find sleeping a difficult thing, especially after having 8 hospitalizations in 10 mos. I feel that anesthetics (especially the short acting ones) and meds being changed aren't necessarily in our best interests. I also have rather high BP, and the symptoms you described mirrored what I went through in probably January of this year. It is now thought that I have Autoimmune Encephalitis brought on by an electrolyte imbalance. I'll go along with this, but truly believe there's more to it than just that. I'll be interested in what the years unfold as it's a fairly new diagnosis. I'm also suffering from a rather severe form of Epilepsy and the drugs for it are exhausting me. These are a few of the "new" symptoms that I'm referring to.

As far as Xmas goes, my husband has often carried the load, although I started Xmas shopping for the following year in January of the year ahead. We had so many to buy for, not just our family, and it made sense to spread energy as far as possible. So, now people have passed away and our daughters have left home. Every other year we celebrate alone, so we're rather used to that. Like your husband, mine does the grocery shopping and prepares a lunch/dinner for us in the afternoon.

We always went to our oldest daughter's for Xmas afternoon/early evening. But that has been nixed this year due to the virus. Our oldest granddaughter had it, has the antibodies to prove it, but we couldn't take any chances. Thus, we spent Thanksgiving alone, and we actually did just fine. Missed the family, of course, but we had a very quiet day celebrated with a chicken.

Xmas this year will also be alone, and we didn't even put a tree up. We have plenty of Thanksgiving decorations that have been up since the early fall. Since they have lights in them, we're happy enough to let them stay in place. Gifts are easy since all of the grandchildren now want money, although I still insist upon getting them a little something. We Zoom, probably like you also do, and even that can be exhausting, can't it? I pull up my adrenaline and it keeps me going for a bit.

However, you're right. A lot of people will be truly alone, unable to get from one room to another and I do think of those in that position. I hope that a neighbor remembers them and, if they have family, that something special is does for them. The freezer should contain some peppermint or eggnog ice cream at the very least.

I have COVID tests frequently and know that I'm free of the illness, thank goodness. Friends visited when we were able to sit on our much loved porch. Not as much now that it's too cold. One who respects quarantine does come and it's good to see people from the outside world.

I hope you and everyone else on Phoenix manage to stay free of the virus this coming year. I think we're all looking forward to immunization. I'm sorry that your son has this illness, and have hope that the younger ones won't deal with the extended period of illness that we had to. May 202l be good to everyone.

Yours,

Lenora.
 
@Jody - What a beautiful and sensitive piece you've written. I've found much relief in ME humor and can't help but have a bit of a laugh that Covid lockdowns have an upside for some people with ME! This is the first year I've looked into pre-cooked holiday meals from local restaurants, it will save myself and support a struggling business. Also, I am so thankful for the gift of the gift bag...no more wrapping! Many blessings to you and yours this season.
 
I think, although it will be more lonely for many people, a Christmas lockdown will also be very helpful for those who get wiped out by all the preparation and festivities, having to eat unsuitable food etc.
I wouldn't have liked a "lonely" Christmas once, but nowadays it will be a blessing.
Candles, carols on the radio, the log fire lit, and my own food, my usual food, will be perfectly fine, and will amount to a gentler and easier time over the festive season.
My usual visitor, a family member isn't coming, as there is Covid in the family house where he is in lodgings. So I said no to Christmas -sadly. I hope he will stay safe.

In the UK, everything is opening up for five days over Christmas. People can visit each other and families can get together.
By early January we will see the consequences. I think it's a terrible idea, yet I know people desperately wanted something to look forward to. Everyone is weary of deprivation and isolation.

I wish everyone here a very peaceful and gentle festive season.
 
Jody...Hello. You wrote a very good article about the Xmas season and its many expectations.

I'm ahead of you by about 10 yrs. or more and I've found that while some symptoms of the illness have disappeared others have taken their place. Oddly enough, I now find sleeping a difficult thing, especially after having 8 hospitalizations in 10 mos. I feel that anesthetics (especially the short acting ones) and meds being changed aren't necessarily in our best interests. I also have rather high BP, and the symptoms you described mirrored what I went through in probably January of this year. It is now thought that I have Autoimmune Encephalitis brought on by an electrolyte imbalance. I'll go along with this, but truly believe there's more to it than just that. I'll be interested in what the years unfold as it's a fairly new diagnosis. I'm also suffering from a rather severe form of Epilepsy and the drugs for it are exhausting me. These are a few of the "new" symptoms that I'm referring to.

As far as Xmas goes, my husband has often carried the load, although I started Xmas shopping for the following year in January of the year ahead. We had so many to buy for, not just our family, and it made sense to spread energy as far as possible. So, now people have passed away and our daughters have left home. Every other year we celebrate alone, so we're rather used to that. Like your husband, mine does the grocery shopping and prepares a lunch/dinner for us in the afternoon.

We always went to our oldest daughter's for Xmas afternoon/early evening. But that has been nixed this year due to the virus. Our oldest granddaughter had it, has the antibodies to prove it, but we couldn't take any chances. Thus, we spent Thanksgiving alone, and we actually did just fine. Missed the family, of course, but we had a very quiet day celebrated with a chicken.

Xmas this year will also be alone, and we didn't even put a tree up. We have plenty of Thanksgiving decorations that have been up since the early fall. Since they have lights in them, we're happy enough to let them stay in place. Gifts are easy since all of the grandchildren now want money, although I still insist upon getting them a little something. We Zoom, probably like you also do, and even that can be exhausting, can't it? I pull up my adrenaline and it keeps me going for a bit.

However, you're right. A lot of people will be truly alone, unable to get from one room to another and I do think of those in that position. I hope that a neighbor remembers them and, if they have family, that something special is does for them. The freezer should contain some peppermint or eggnog ice cream at the very least.

I have COVID tests frequently and know that I'm free of the illness, thank goodness. Friends visited when we were able to sit on our much loved porch. Not as much now that it's too cold. One who respects quarantine does come and it's good to see people from the outside world.

I hope you and everyone else on Phoenix manage to stay free of the virus this coming year. I think we're all looking forward to immunization. I'm sorry that your son has this illness, and have hope that the younger ones won't deal with the extended period of illness that we had to. May 202l be good to everyone.

Yours,

Lenora.
Hi Lenora

8 hospitalizations in 10 mos? That's rough! Christmas should be simple this year:)

Thanks for sharing your experience and insights with us. Stay safe!

Jody
 
@Jody - What a beautiful and sensitive piece you've written. I've found much relief in ME humor and can't help but have a bit of a laugh that Covid lockdowns have an upside for some people with ME! This is the first year I've looked into pre-cooked holiday meals from local restaurants, it will save myself and support a struggling business. Also, I am so thankful for the gift of the gift bag...no more wrapping! Many blessings to you and yours this season.
Diwi9,

Thanks! It is odd, but many things are easier for me as people go less contact and more virtual/ remote, Fits my chronic lifestyle:)
 
I think, although it will be more lonely for many people, a Christmas lockdown will also be very helpful for those who get wiped out by all the preparation and festivities, having to eat unsuitable food etc.
I wouldn't have liked a "lonely" Christmas once, but nowadays it will be a blessing.
Candles, carols on the radio, the log fire lit, and my own food, my usual food, will be perfectly fine, and will amount to a gentler and easier time over the festive season.
My usual visitor, a family member isn't coming, as there is Covid in the family house where he is in lodgings. So I said no to Christmas -sadly. I hope he will stay safe.

In the UK, everything is opening up for five days over Christmas. People can visit each other and families can get together.
By early January we will see the consequences. I think it's a terrible idea, yet I know people desperately wanted something to look forward to. Everyone is weary of deprivation and isolation.

I wish everyone here a very peaceful and gentle festive season.
Wolfcub,

Quiet and simple works for me. It is hard on people -- especially for those not used to quiet solitude.

Stay safe!

Jody
 
Thank you for your thoughtful and insightful article, @Jody.

Things will be quiet for us, just my husband and I, and we have a nice little tree this year- which we did not do last year. I do really enjoy gazing at it in the evenings. The voices and laughter of the children downstairs, is somehow enjoyable...they will have a nice Xmas. I can appreciate that somebody else will: have a nice Xmas.

It seems we can in fact enjoy the holidays in a more centered and calm way, with less emphasis of gifts and so much pressure we place on ourselves. Yes, for a "holiday" season, it can certainly be internally and externally demanding.

Its our wintertime, and we dream of hope for spring and a cycle of renewal.:hug:
 
Like many, since becoming ill, Christmas along with many celebrations have been off the menu for a number of years. We are in lock down again in the U.K and there really is no escape now the rules have been changed for the umpteenth time. For me it's a blessing because the effort is just way to much to handle.
The small tree is up along with a few lights. So, It's just myself, my better half, and peace and quiet.
Wonderful......