If you’ve been following my posts, you know that I have lived for over three decades with a chronic illness. I’ve accepted that the illness—at least for today—doesn’t have a cure. I’ve also accepted (mind you, acceptance doesn’t mean I like it) that “chronic” means it might be around a while or, as Miriam Webster defines “a while,” for a period of indeterminate length. Well, I’ve lived with it for a long duration already and for living I’m very grateful. Overall, when I look at my life thus far, I’m pleased with what I see. Of course, there are a few things I’d like to trade in, but for the most part, I’m happy.
Now, the one part of chronic illness that I have trouble accepting is its chronic unpredictability. Take last Saturday, for example. I woke up and I felt good—not okay, but good. In fact, it was the first time that I’d felt really well in a while; my eyes sparkled, I had a quick wit and made my husband laugh, and I was ready to go and enjoy the day. We set out on a walk through a new neighborhood (house hunting, of course!) and I commented on the beautiful blue skies, the birds singing, the gorgeous oak trees overhanging the street and every other positive thing that caught my attention. We followed our walk with a nice lunch out. I was reveling in my day!
Then came three o’clock. By that time, we were home again and every bit of my energy was gone. I was dragging around. For me, this is the hardest part of living with chronic illness: When I feel well, I want to be fully engaged in life for more than a few hours. Now, don’t even start down the path of, “you did too much, Cindy,” because, honestly, what I did that morning would not normally be too much. But lupus is the chronically unpredictable stepsister to the chronically predictable life I’d like to live. On that particular Saturday, my energy simply drained quickly and my sparkle had to head for the bedroom to take a nap. This chronic unpredictability makes me sad. I like my sparkle and I like feeling really good for longer than a walk and lunch out. And don’t even get me started on letting others down when unpredictability rears her ugly head and forces me to change. That just compounds the issue.
I don’t think I’ll ever be able to accept the unpredictable nature of living with chronic illness, although I will continue to work on it. However, I can choose to focus on the times when I feel good and the times when I sparkle. Then, when ugly stepsister rears her head and forces me to bed (love that rhyme), I can pretend I’m Cinderella and I get the glass slippers when I wake up from my nap.
About Cindy Coney: Ambassador of hope and author of The Wild Woman’s Guide to Living with Chronic Illness, Cindy Coney is a nationally acclaimed speaker, trainer, human resilience expert, and philanthropic force. Dedicated to helping both children and adults achieve optimal health and success, Cindy has taught thousands of people to move beyond coping with limitations to recapturing joy and fulfillment in their lives.
Diagnosed with lupus in 1980, Cindy has since driven a race car 124 miles per hour; completed the Chicago Marathon; championed countless nonprofit organizations; presented to the World Lupus Congress as a keynote speaker; and shared her inspiring, empowering story from Belize to Baltimore.
Follow Cindy’s Blog at www.cindyconey.com
PainPathways is the first, only and ultimate pain magazine. First published in spring 2008, PainPathways is the culmination of the vision of Richard L. Rauck, MD, to provide a shared resource for people living with and caring for others in pain. This quarterly resource not only provides in-depth information on current treatments, therapies and research studies but also connects people who live with pain, both personally and professionally.