The holiday season is here and with it comes a collective groan from almost everyone in my chronic illness communities. Everyone seems excited about the holidays, but we are all expressing worry, dismay, and stress at surviving the holidays with chronic illness without flaring.
It’s no fun at all to be sick for the holidays, especially when you’re sick every year. When one year turns into two or three or 10, it’s natural to feel down about the holiday season. Many of us struggle with depression, feelings of self-worth, being a burden, or simply having to accept that we can’t do most of what would normally be a full social calendar with family and loved ones.The holiday season is stressful on those of us who have limited energy and suffer from pain. We have to manage our health while getting through shopping, cooking, winter events, travel, and much more. Click To Tweet
I’m being honest when I say that November and December are my most dreaded months of the year.
The pressure is always on to do more during these two months. After spending two out of the last four years in the hospital at this time of year, I’m very aware that I should be doing less! I rest and pace as much as possible to end the year on a semi-decent note with my health.
It’s 2021 and this is my 12th Christmas being sick. I’m lucky if I can manage two events: my anniversary and Christmas Eve or Christmas Day with friends.
Surviving the Holidays with Chronic Illness [Updated December 2021]
Here are a few quick tips that I use to get through the holidays with Ankylosing Spondylitis, Fibromyalgia and ME/CFS:
- Pacing and management are key to getting through the holiday season.
- Two outings per month is my golden rule all year, but it’s especially important during November and December.
- Plan a few rest days before and after each outing or event.
- We try to attend one or two events during December IF WE CAN. If we can’t, we don’t feel bad about it.
- My husband does the grocery shopping. I help him unpack, but I let him do all the grocery shopping and remain grateful that he is able to do this for us. I try not to feel guilty about not being able to help him with this anymore.
- I do all my Christmas shopping online. I never feel bad about sending gift cards.
- Keep it simple. We don’t go overboard on decorating.
- Say ‘no’ and don’t feel bad about it.
- Remember to practice self-care and self-love.
As I mentioned above, the holiday season is stressful for those of us who are chronically ill. Over the past four years, I’ve made some adjustments to our day to day life during November and December to get through the holidays without making myself worse.
My number one rule for life, but especially during the holidays is to manage my time well.
I have an online calendar that I’m diligent about with upkeep. I pace accordingly and have to allow my time at the hospital to take up some of my precious time during December.
If I have to leave my house, I make sure I don’t do anything the day before or the day after so I have time to rest.
This really helps with stress as well because then I don’t have to worry about how much energy I’m burning through over 48 hours. I know I have two 24-hour recovery windows before and after each event.
Right now, I’m savoring the end of this year and looking forward to next year. I have been housebound and in pain for many years now. In 2018 when I wrote this post, I’d started a new medication that allowed me to spend a bit more time on my feet without suffering so much. My goal is to always try and keep my baseline step count from dipping to not moving at all.
Extra call times with my family are precious to me. Unfortunately, we live half a world away from our families, so we don’t have to travel for the holidays, but that also means we don’t get to see our families. Everyone looks forward to these calls and appreciates that we are together even though we’re so far apart.
I really savor quiet Christmas days with my husband. We stay in our pajamas and we nibble on treats all day. All the things I don’t eat during the rest of the year are allowed on Christmas Day, as long as I eat in moderation.
I moved to shopping online for everything many years ago. If I’m up to it, I’ll have things sent to my home so I can add some personal touches by wrapping gifts myself. If that doesn’t happen, it’s ok!
I’ve also changed how I cook for events. We don’t host an event at our home now unless my husband wants to cook. He usually likes to do this for Thanksgiving, so I help him with the easy tasks.
We also limit how long guests are at our house to ensure I don’t overdo it. (We don’t normally have people over throughout the year because this is our space and it’s where I spend most of my time sick in bed. I don’t like having to entertain people in my home unless it’s at my husband’s request.)
We have gone to the Grand Hyatt for their Christmas buffet for the last 10 years for our Christmas meal. In the last four years, my husband has helped by getting my food for me so I can sit and enjoy eating with everyone.
That said, even a measly two hours seated at a restaurant can leave me feeling really ill and itching to go home to bed. It’s a fine balance that I have no control over, so I do my best to accept that it is what it is.
Simplifying our home has become a huge mission for us. Last year I spent my whole year moving slowly through our home and de-junking each room.
Everything that was a reminder of my old life: party dresses, heels, big bags, and so on, all of it was donated. Clearing out doesn’t mean letting go or giving up. It means making room for new things to enjoy.
The relief I felt at having more room to enjoy without the clutter was amazing, and those reminders of my old life were no longer around to make me feel bad about what I’ve lost.
We also made another massive change to simplify things last year. Sometimes, we don’t put up a Christmas tree because it’s too much work and it’s mostly me doing that work. In the past few years, I simply haven’t been able to do it, so I made a Christmas table instead and saved my energy.
Surviving the Holidays with Chronic Illness
In 2019, I made a Christmas table. It was just as cheerful and festive as a tree and it was at a height that I can sit at comfortably, so that made all of it quite easy to manage.
It looked nice and we’ll jazz it up a little more this year and add some more lights. It made our Christmas morning much more enjoyable. (Plus we didn’t have to worry about our cats getting into the tree.)
Rest is the most important thing on my mind at all times.
If I do something, I time it and then rest for the rest of the day. If I know I have something coming up, I rest before I do it.Given my extreme health limitations, I plan ahead and pay attention to what I have to do and what I'm doing while I'm at it. Click To Tweet
Pacing for and during each activity is also important. I limit how much time I’m out and I make sure I know exactly how much energy I have to get things done. Once I hit the magic number on my FitBit, I stop.
This means that I’ve been ticking things off my year-end to-do list since September and I’m not feeling so anxious to wrap the year up.
I’m ready for 2018 to be over. This has been the worst year by far for my health. My switch to a new medication seems to be going well (so far) and I’m really hoping that 2019 will be looking up and possibly give me a little more to work with.
It’s so important to rest. I’m hoping to end my year feeling rested and unstressed, which is how I feel right now.
I don’t have many more tasks to complete for 2018 aside from mailing some packages and finishing our Christmas table.
The only thing I had left that I really wanted to do was finish my year with A Chronic Voice‘s link up party and now, CHECK. It’s done.
Happy Holidays, everyone!