In 43 years I can’t remember a Christmas that wasn’t exhausting.
When I was 7, the excitement of seeing whether Santa had visited became unbearable around 5am. Like all kids, I was eager to discover what exactly he’d left for me under the tree. As a consequence, my parents and I had heavy eyelids and melting Quality Streets in our palms by 7pm. A long day, but still an early night.
In my late teens and 20’s Christmas season was no longer about family (which I regret), but about partying as hard as possible. I’d wake up with eyelids that were sealed shut and breath offensive enough to summon the devil himself. Further drinking was thought to be the only solution, but by 7pm I was finished and looking forward to a decent cooked breakfast on Boxing Day.
Now I’m an old woman (a comment made by my 8-year-old daughter this week!) and in my 40’s, the exhaustion is in a world of it’s own. I crave the ability to get drunk repeatedly and exist with a hangover every morning throughout the holiday period. Good times.
This exhaustion is the result of a chronic illness, and while people living with conditions like Ehlers Danlos Syndrome make decisions related to pacing throughout each day, Christmas (and other big events) require a lot more planning if we don’t want to miss the fun completely.
I learned this lesson the hard way. The last 5 Christmasses have been completely different…all because this genetic disorder started to get progressively worse, and symptom management is the only solution. I can’t have an operation, take part in physio or recover from the problem over time…it’ll always be there, and certain environmental changes will always affect it.
For example, when I catch nothing more than a standard common cold, I know I’ve caught it before the runny nose and sneezles start. It begins with unexpected swelling around some of my joints; usually my wrists knees and ankles. Then stiffness spreads, hateful headaches wash over me like a repeating tsunami, and I struggle to concentrate. My sleep becomes appalling, trying desperately to be mindful and calm at 3am to force some kip. Then, without fail, the overriding problem becomes fatigue.
Fatigue is a funny old thing. It’s becoming an overused word, but there is a difference between tiredness and fatigue. The Oxford Languages English Dictionary describes fatigue as…
“Extreme tiredness resulting from mental or physical exertion or illness.”
For me, fatigue FEELS different. I hurt, I can’t focus, I droop, I struggle, I’m confused, I ache and from the outside looking in I’m apparantly difficult to communicate with and causing alarm.
In these situations I know the answer is rest and/or sleep. My body is literally telling me to stop. In fact, it’s slowing down for me while I fight back in an attempt not to let people down. But my body will inevitably win, and I’ll lose the fight to stay present because the alternative will be too painful and difficult to manage.
I usually sleep for hours but wake up a few times. Why can’t I sleep through? I think my personality won’t allow it – I need to know that my disappearance isn’t ruining everyone elses day. I check in with everyone in a pathetically snoozy way, then digest their okay-ness and sleep again. I only wake up when the pain in my legs (always the worst) tells me to.
Until I’ve recovered, the infection is gone, and the flare up ends, this process repeats. Last christmas all this happened, and I was ruined and asleep at 3pm. I hate this.
Don’t forget, even after a flare up ends us Spoonies have to be chronically aware of further pain, and plan plan plan to manage symptoms every single day.
So, this explanation of fatigue leads to my point.
How do people with fatigue, illness and/or pain that’s chronic manage an event like Christmas?
These are a few tips I’ve picked up over the years.
Don’t climb the mountain, summon it
All those gatherings involve a lot of planning as well as travel, socialising and the forced-fun we all put up with annually.
Rather than forcing yourself to fit in with plans made by others, make your own at home and include the people you value in a way that works better for you.
Place limitations on the event, whether you want to explain that it’ll end at a specific time, or that there’ll be no alcohol (boring, but sometimes helpful), no plus-ones, no gifts to worry about…whatever. The rules are yours to make. You might even want to split it all up into several meet-ups over a couple of weeks, with smaller groups giving you time to recover and still enjoy some downtime between each.
Get comfy
There’s nothing worse than the ‘Christmas Table Conundrum’. Too many people and not enough chairs always results in an improvised seating plan using the laundry basket and a deckchair. The person who suffers as a result is almost always the host.
Don’t feel selfish for getting comfortable. Bring your squishmallow into the room with you. Wear ambient noise reducing earplugs if they’ll help control your headache (for example, some earplugs allow you to hear people while mitigating the amount of white noise around you). Put on sparkly joggers rather than the figure-hugging sequin dress that’ll irritate your skin and make you uncomfortable. Sit at the dining table with a hot water bottle if it’s one of your pain-reducing tools. You could even think about eating earlier so the afternoon is free for a short rest, allowing you to re-join the fun in the evening.
Whatever makes you comfortable, you’ll be glad you used it. Everything that slows down your fatigue will help make the holidays longer and more enjoyable not just for you, but for those around you too.
Work out your priorities
What really matters? What can you simply not imagine Christmas without? What do you know your kids want to share with you? Which friends and family members are you determined to make time for? What are the things you’ve been dreaming about? Which TV shows and movies are on your must-see list? What essential, mindful, fulfilling time are you going to make for yourself?
Then think about the things you’d LIKE to do. Where would you like to go if you have an unexpected day of freedom? Who would you like to visit if you have some extra pain-free time to play with? What games would you like to play with your family if tiredness isn’t taking over? What hobbies do you want to spend time on when some you-time magically appears?
Finally, the hard part. Start culling the things you don’t need to worry about this year. Which events aren’t really that important? Who could you see at home or another time without attending a long night out? Which nights can you reserve for an early bedtime rather than trying to fill with more festivities? How much planning do you need to do yourself? Who can help take some of the strain away? Will someone assist with wrapping, write the cards, bake the gingerbread or take your kids out so you can have a few extra important moments of rest?
Accept help wherever you can, talk to people about alternative arrangements and be honest about your realistic capabilities, your symptoms and how you need to manage them.
Giving those around you realistic expectations and an honest picture will make the whole of December a bit kinder and more understanding, and hopefully remove some of the worry.
Rest
Last but not least is the obvious, but I’m mentioning it again for an important reason. Christmas is busy. The expectation to be involved in gatherings night after night is very real, and while it’s important to have those connections, it’s also important to know your limits and prioritise what’s manageable and most important to you whilst also balancing an appropriate amount of rest with it.
The ME Association has a brilliant leaflet all about pacing for people living with chronic fatigue and long covid. It explains the basic principles of the process, as well as information about the management of common triggers such as PEM (post exertional malaise).
Using a guide like this is helpful for everyday of the chronic existence, but if you’re new to the practice of pacing then getting ready for Christmas NOW might be a good starting point for your pacing journey (sorry to use the ‘J word’).
In conclusion
I guess the overriding message in all this, the key to pacing Christmas, is to plan, plan, plan.
Patient Access (another UK organisation with healthcare advice that I found via my GP) has a specific page about Christmas with a chronic illness on their website, and it has much more in-depth advice than I’ll ever come up with. Worth a look.
In the meantime, think about what you’ll do, when you’ll do it, how you’ll get there, what you’ll need to take, how long you can stay, what to do if you feel unwell, when you’ll rest, what your priorities are and, most importantly, plan self-care.
We all feel the pressure of the time of year, but the anxiety alone, the need to get everything right and keep everyone happy, can lead to an almighty crash followed by a flare up like no other.
Self-care is more important at this time of year than ever. Christmas is all about caring for people, being kind, and being grateful for what you have. All of those important elements of the season should be applied to yourself as well. You are supposed to enjoy it too. You are supposed to be pain-free, engaged, making memories and (most of all) happy. Don’t skip over your needs because it’s what you’ve always done or because it seems easy. Taking care of YOU will make it more enjoyable in every way, and ultimately you’ll have another Christmas with memories of what’s important, and the knowledge you can do both things…manage your fatigue but still be present.
Most of all, please don’t beat yourself up if you make changes to the norm. No one who loves you will be frustrated by your decisions, they’ll just be glad to still be involved and know you’re not masking your pain beneath a fake-ass smile.
Have a great christmas, enjoy the moments you can, and hold on tight to the rest you need and deserve. Thanks for reading.
P.S. Just to make everyone feel better – I’m trying to give good advice, but I’m already struggling to take it myself. The inspiration for this post was my internal negative dialogue about my Christmas plans having to change and how it’ll effect our daughter. Small steps, I guess.
Creative Steph 