If I wake before my 5-year-old son, he asks me, "What did I miss?" He looks more like his father, with his dark eyes and copper skin, but when he asks that question, I see me in him. I have always had a sense of urgency about me. I don't want to miss out on anything life has to offer. But at age 35, I was diagnosed with psoriatic arthritis, an autoimmune disease that, when left untreated, can be debilitating. There is no cure. My diagnosis was not a death sentence, but my mobility slowed as the disease progressed. The question I asked at one of my first rheumatology appointments was, "Will I still get to be an old lady?" I, for sure, didn't want to miss out on that opportunity.
May is both Arthritis Awareness Month and Mental Health Awareness Month. These issues definitely converge in me. I am not one who enjoys a slower pace. Dr. Kristine Lohr, chief and medical director of the Division of Rheumatology at the University of Kentucky, told me via email, "When feeling good, some people work till they drop — and then they're drained and have to start over."
That is exactly what I do. When I feel good, I just keep going until I don't feel good anymore. I crash before I know what's happening and my body forces me to power down and rest. That's when I get sad, angry and frustrated. I feel like I'm missing out on life and letting my loved ones down.
The Mayo Clinic says: "The key isn't to stop being active entirely, but to rest before you become too tired. Divide exercise or work activities into short segments. Find time to relax several times throughout the day." I'd like someone to explain this to my 5-year-old, the pets and the dishes stacked in the sink. Life doesn't happen inside neat little schedules. Plus, my zest for life doesn't quite match the illness's demand that I slow down. My son certainly deserves better, which is why, on good days, you'll find me playing in the yard and not using energy to wash dishes. Dishes can — and do — wait.
Dr. Eric Ruderman, associate chief of clinical affairs for the division of rheumatology at Northwestern University Feinberg School of Medicine, says, "Unfortunately, depression is a very real problem in psoriatic arthritis and rheumatoid arthritis."
I don't think I need a formal diagnosis of depression, but I definitely feel the roller coaster of emotions that comes with the onset of symptoms. Fatigue can affect my mental clarity, but it does not prevent me from feeling sad or like a piece of furniture in my own home. I do my part to fight the disease. I eat well, stay active and take my medications like I'm supposed to, but it's not always enough. I still crash. I still burn. I still cry. Then I rest, recuperate and fall back in step with life.
I'm still figuring out how to balance what I want to do with what I can do, and I'm trying to be kind to myself emotionally along the way, which is good advice for anyone, really. I'm grateful I have a supportive family and friends who "get it." It's my loved ones who keep me moving forward so I don't miss out on the things most important to me.
Bonnie Jean Feldkamp is a wife, mother and award-winning columnist. She is the media director of the National Society of Newspaper Columnists. Find her on social media @WriterBonnie, or email her at [email protected] To find out more about Bonnie Jean Feldkamp and read features by other Creators Syndicate writers and cartoonists, visit the Creators Syndicate website at www.creators.com.
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