Since becoming ill with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) more than 14 years ago, I have been surprised by how life with chronic illness makes me more aware of the small joys around me. Although living with ME/CFS means life now is often defined by restrictions and managing my energy, I have found that there are many joys in everyday life. One way that my family and I find joy in every day is to celebrate all kinds of occasions, big and small. Our focus on celebrations became even more important when both of our sons later became ill with ME/CFS and Lyme disease.
I came by my love of celebration from my mother. When I was a kid, we celebrated everything, and I loved the atmosphere of joy and festivity. My mom was, and still is, a major party animal, so I learned from the best! When I had kids, I knew I wanted to do the same thing for them. Our kids love our celebration traditions (even now that they’re grown), and after chronic illness entered our lives, these became even more important — a way of injecting joy and fun into our lives, even (especially) on the bad days.
Finding Joy While Living with ME/CFS
Of course, we celebrate the big holidays, though we’ve had to scale back since ME/CFS symptoms hit. We now focus on certain elements of each holiday that are the most important to us. At Christmas, that’s decorating our tree together and getting together with our oldest friends for a cookie decorating/Grinch-watching party (we now buy premade cookie dough). Our sons still look forward to these traditions, even now that they are adults.
The big holidays can be overwhelming, though, and besides, there are long periods of time in between them. We also celebrate all kinds of smaller occasions, and this can be even more fun, with less stress! This period of time in the dead of winter, after the major holiday season is past, can often be a dark and depressing time — with a long wait until Easter and spring. But there are lots of smaller holidays that are perfect for celebrating and can add a bit of joy to an otherwise dreary winter.
One favorite is the Superbowl, the first Sunday in February. We’re not big football fans, and our days of attending big Superbowl parties are long past, but we still enjoy getting into the spirit of the occasion. We have our favorite game day foods every year – simple things like chips with salsa and guacamole, mini hot dogs rolled in crescent rolls, and my husband’s famous Buffalo Chicken (just pieces of chicken breast sautéed in Buffalo wing sauce). We watch the game, enjoy our foods, and eagerly watch the much-anticipated TV ads!
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Mardi Gras (the day before Ash Wednesday) is considered a major holiday at our house because my husband and I used to live in New Orleans. Before I got sick, we had an annual Mardi Gras party that grew to 50-60 people at its height. A few years into my illness, we realized that we didn’t have to give it up completely; we just had to scale it back. Now, we invite just a few close friends over, buy some food (like King Cake from a local bakery) and make a couple of favorites, like red beans and rice and jambalaya. Friends bring food, too. We play New Orleans’ music, enjoy the food and company, and sometimes watch the real Mardi Gras parades online.
This season also brings Valentine’s Day (February 14), another celebration we enjoy each year. We hang up heart decorations, give each other cards and treats, and indulge in a simple chocolate fondue for dessert. On St. Patricks’ Day (March 17), we celebrate similarly, wearing green, hanging up shamrock decorations, and eating our traditional corned beef and cabbage dinner. It doesn’t matter that we aren’t Irish; we still join in the fun and make it a special day. If you like jokes and pranks, April Fool’s Day (April 1) is a fun one to celebrate. One year, I even celebrated Groundhog Day (February 2) by putting little edible groundhogs made from cookies into my sons’ bowls of oatmeal for breakfast!
You don’t need a holiday for an excuse to celebrate. Once or twice a year, I make our favorite enchiladas and we have Mexican night, with a colorful serape on the table and a special orange-mango fizzy drink. We used to celebrate the start of summer by going with friends to play in a creek after school let out. And, of course, there is always a party when we visit Grandma (my mom)!
If you are more severely ill or in the midst of ME/CFS treatments, you may be thinking that you can’t celebrate, but there are small ways to make a day special, with the help of friends or family:
- Dress for the holiday, even if it’s just colored or themed pajamas and some whimsical socks or earrings!
- Hang up simple decorations near your couch or bed – we have different sets of window clings for each holiday, and I still hang up holiday-themed artwork my sons made in school when they were little.
- Listen to some appropriate music (New Orleans’ jazz for Mardi Gras, Irish music for St. Patrick’s Day).
- Watch holiday-themed movies, like Valentine’s Day, Mardi Gras (starring Pat Boone), or Finian’s Rainbow (a surprising number of results come up when you search for “movies with leprechauns in them”). And, of course, you have to watch Groundhog Day on Groundhog Day – at least twice!
- Cuddle your children or grandchildren (or nieces & nephews) in bed with you and read holiday-themed books together. If that’s too much for you, listen to audio books or watch short videos together.
- Eat holiday-themed foods – the best part of any celebration! Enlist the help of a friend or family member (or a local restaurant delivery service) to cook or order in appropriate foods: Chinese take-out on Chinese New Year, corned beef on St. Patrick’s Day, Mexican on Cinco de Mayo.
- Watch events live on TV or online – parades, events like New Year’s Eve at Times Square, and more – almost everything is televised or live-streamed now.
ME/CFS recovery can be a daunting task, but take time to celebrate both the big and small moments in your life. Next time you are having a bad day or week or month (or year), find a reason to celebrate and insert some joy into your life!
This article was first published on ProHealth.com on February 4, 2016 and was updated on December 5, 2019.
Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com.