By Cindy Leyland
Both my 27-year old cousin and one of my sister’s best friends have metastatic breast cancer. My co-worker lost her first husband to brain cancer and now her husband of more than a decade is being treated for multiple myeloma. At least 26 people died because of Hurricane Irma, Hurricane Jose cut a wide swath of damage, and now we’re wondering what Hurricane Maria will do. Nearly three dozen people were hurt Friday morning when a bomb exploded in a London Underground train.
And I want to complain because I have fibromyalgia? Well…yes.
While I know that fibromyalgia most likely will not cause my death like cancer, a hurricane or a bomb may, I still don’t feel well. And I’m not in any contest to determine who feels worse – the cancer patient or the fibromyalgia patient. I am in a contest to be a better version of myself today than I was yesterday. But some days that includes complaining. Even while knowing that so many others have far worse issues.
Last Thursday morning, I overslept. That’s never a good way to start the day. Then I took the wrong bus and ended up in a scary part of town and was even later getting to work. The day just kept getting better. I had a dental appointment at 4:00 pm that had been rescheduled once already, which meant I needed to leave early. And I felt terrible. Rather than identifying what did hurt, it was easier to focus on what DIDN’T hurt – that list was short. The brain fog seemed to have settled in for a long visit (i.e., wrong bus event). My to-do list for the day was already beyond my capacity on a good day. The exhaustion threatened to flatten me at any moment.
But I was at work and there was work to be done. So I squared my shoulders and put my “super bad fibro day plan" into action.
Do what you can when you can.
Most to-do lists usually include a variety of what Steven Covey defined as urgent and important tasks. In a 2012 Forbes Magazine article, Eric Jackson wrote about Steven Covey’s 7 Habits and distilled them into these two: 1) Do something, and 2) Plan what you’re taking action about. He then described the four-quadrant time management matrix as the most important message.
In the spirit of doing something, I looked at my to-do list and determined to focus on only the urgent and important items – time sensitive, can’t wait another day issues. The rest of my list would wait until another day, one with more energy and less pain.
In the face of so much sorrow and sadness, combined with pain and fatigue, it’s sometimes easy to feel powerless. However, there is always something we can do – send a card to a loved one, send flowers, cook an extra meal, sometimes simply smile at someone. The cousin I mentioned had just had surgery, and it felt very important to me to visit her and her mom while she was in the hospital. Given my energy level, there was no way I could work all day and then go visit. Again in the spirit of urgent and important, I chose to leave work even earlier to visit the hospital before the dental appointment. That meant a few extra things got pushed to the next day’s to-do list, but my spirit was lifted by seeing my cousin’s sweet face and I felt better about managing my energy.
We know that people get tired of hearing about our pain and fatigue, not to mention what seems like being less than dependable. I am dependable – it’s just that I never know when the symptoms of fibromyalgia will overwhelm me. So I apologize a lot. And then some more. Constantly apologizing wounds our spirit and lessens our sense of worth. So don’t do it. No one asks for an illness, whether it’s cancer, depression, diabetes or fibromyalgia. Do what you can, accept yourself and stop apologizing.
Gratitude is more than a buzzword. I remember my great-grandmother walking through the house saying “Thank God for Jesus!” She always had something to be thankful for. Gratitude strengthens us, supports us in our quiet, sad moments, and helps us know we are not alone.
In her book, 29 Gifts, Cami Walker shares her story of an unlikely prescription given to her by her spiritual healer: give 29 gifts in 29 days. Give from the heart and think about what you DO have instead of what you DON'T have. Cami lives with multiple sclerosis and she resisted the prescription at first, wondering what she had to give to anyone else. She discovered a great secret: it wasn’t the gift that was important; rather, it was learning to be mindful and grateful. As she gave her 29 gifts, her heart opened to the many gifts given to her – she was practicing gratitude.
Laugh – with and at yourself.
One of the greatest compliments I ever received was when someone told me they appreciated how I could "laugh at myself.” You know that Pinterest quote “Some days I amaze myself; other days I put my keys in the fridge.”? Well, that’s me.
I’ve gotten great mileage out of the wrong bus story. Laughing at some of my crazy antics helps get me through some of the toughest days. As quoted in this article, author Susan Sparks says, “If you can laugh at yourself, you can forgive yourself. And if you can forgive yourself, you can forgive others.” Laughing at ourselves helps build resilience, and resilience is a necessary element of living with fibromyalgia. How else do we get up and face the uncertainty of each day?
It’s a new week and I am determined to take care of myself, get on the right bus, practice gratitude and laugh a lot. How about you? What’s your “super bad fibro day” plan?
Cindy Leyland is ProHealth's Fibromyalgia Editor. Cindy also serves as the Director of Program Operations at the Center for Practical Bioethics and the PAINS Project Director. She lives in Kansas City with her husband, enjoys hiking, reading, volunteering with Synergy Services and being Gramma Cindy.