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* This guest post was writtten by Sue who is the creator of Living With ME/CFS
My family’s chronic illness story is a complicated one. It began on March 2, 2002, when I woke up feeling very sick, with a terrible sore throat and flu-like aches. Prior to that, I had been very healthy and active, so I assumed I had the flu … only it never went away. A year later, I was finally diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), an immune disorder, by a new primary care doctor. I was fortunate that she had experience with the disease, recognized it, and knew how to treat it (not many doctors do).
I began to see small improvements from treatments, but two years later, the unthinkable happened. Our two sons, just 6 and 10 years old, also got ME/CFS (it has genetic roots and often runs in families). We were devastated and went through some dark times as a family, with three of the four of us often debilitated at the same time. A few years later, my older son and I both got Lyme disease, plus two other tick infections for him.
Little by little, treatments began to help all three of us, and our physical conditions improved, though we were still severely limited (the primary characteristic of ME/CFS is that even mild exertion makes you sicker, requiring restriction of all activity). We also slowly began to heal and improve emotionally, gradually adjusting to our “new normal.” Here are some of the lessons we learned and strategies that helped us over the past 20 years:
Find Small Joys in Every Day
It’s easy to focus on what you can no longer do, but one key to being content in your new life is finding things you can still enjoy. Even in a very restricted life, there will still be small pleasures. These might be things as simple as enjoying a beautiful spring day in your yard or through your window, watching a favorite TV show or reading/listening to a good book, or hearing your children laugh.
I began keeping a Joy Journal, where I jotted down the small joys in my life at the end of each day: sunshine, my favorite herbal tea, a hug, or belly laughs at a funny movie. I learned that noticing what brings you joy actually helps you to experience more of it!
Nurture Old Pleasures and Find New Ones
After ME/CFS, many of my former activities were no longer possible, like backpacking, concerts, or exercise classes. It’s essential to find a way to nurture your old passions and consider what new things you might like to try.
For me, I had loved reading since I was a child. I realized that reading was one of the few activities I loved that I could still do (if reading is difficult for you, try audio books). I started chatting with other book lovers online, eventually joining book groups (online and in my neighborhood) and starting a book blog. Being able to indulge in this passion enriches my life.
In other cases, you may have to make adjustments. My family and I had always loved outdoor activities and travel, but now we were somewhat limited. We continued camping with our pop-up camper (our little home away from home) and taking our annual summer road trip. We went at our own slow pace, rested every afternoon, did mild activities when we all felt up to it, and continued to enjoy the outdoors in a new way.
Many people living with chronic illness or disability discover new interests. You can now find online courses or how-to videos on anything you can imagine! Maybe you want to learn to knit, paint, or do some genealogy research on your family. Look online for classes, videos, articles, and like-minded people to connect with. Nurturing a new interest can bring joy and meaning to a life that is restricted.
Celebrate the Small Stuff
I had grown up with a mom who loved to celebrate, so we were bringing up our sons the same way, but after three of us got sick, our mini celebrations became even more important. When every day starts to feel the same, and weeks or months pass when you can’t leave the house, everyone starts to feel down. Planning a simple celebration can boost your spirits, even if it’s just you!
We had our own little Superbowl “party” each January, with just the four of us and yummy snacks for dinner while watching the big game. Valentine’s Day was always celebrated at our house with heart decorations and a simple melted chocolate fondue. We celebrated St. Patrick’s Day by wearing green and eating corned beef and cabbage.
Celebrations don’t have to be elaborate—just make or order appropriate food, put up some simple decorations (paper streamers are cheap and cheery), play music to suit the occasion, or watch a holiday-themed TV show or movie. Dressing the part helps, too, with color-themed clothes or holiday-themed socks, earrings, or t-shirts. You don’t even need a “holiday.” When I saw my crew needed a pick-me-up, I’d announce Mexican Night, with Mexican food (cooked or take-out), music, and decorations. Movie marathons can give you something to look forward to any time of year!
Don’t underestimate the restorative powers of nature. When you feel awful, it is tempting to just stay inside, but even just a few minutes outdoors can lift your spirits. Scientific studies show measurable improvements in both physical (including immune function!) and emotional health from spending time in nature. Even five minutes provides benefits; just looking at photos or movies of nature has been proven to improve health!
On my worst days, I just lie out on our back deck for 15 minutes. For best results, leave the devices inside and really tune into the natural world around you in your yard or garden or even from a balcony or window. Look up at the clouds and notice their shapes and how they move, listen to bird song and the breeze blowing through the trees, smell freshly cut grass or the scent of flowers, and watch the changing seasons in your little patch of outdoors.
All of these strategies have helped our family to carve out a happy and satisfying life, even though our lives are often limited by restrictions. It’s all about finding peace from accepting where you are today and finding joy in the world around you, even if your world is a different one now.
Connect with Suzan Jackson:
My book: http://www.suzanjacksonbooks.com
I hope you liked this post and big thanks to Sue for sharing your story!
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