If You Look Beneath My Smile That Hides My Fibromyalgia
I remember well the day this photo was taken. We were in our first year of homeschooling and I had been helping my son with a science experiment. It took every ounce of energy I had to do so because I was completely out of spoons. I looked at the picture after it was taken and thought how deceptive it would look to someone who did not know me. Well, to anyone who knew me, really. I mean, look at me. Bright eyes, thick hair, a small grin on my face. But my eyes were struggling to stay open because I was so tired, my hair thinning because it falls out constantly, and I was feeling anything but happy at the time. I actually felt like I had been run over by a truck. Which is how I feel a lot of the time.
I am not sure exactly when I was diagnosed with fibromyalgia because the term was tossed around doctor’s appointments like a hot potato. I do know that I have struggled with energy and pain issues most of my life. The past seven years have been a steady decline of health and function. My quality of life has been compromised to the point that if I overdo it, I pay for it for days. Napping is not a luxury, it is a necessity. Some days the fatigue and pain are worse than others. Brain fog has stolen my ability to remember things for even a short time and I am constantly having to ask for things to be repeated. But my illness is deceptive, because some days I can function like a healthy person. Or at least it appears to be so. Beneath the façade of a smile on my face, laughter in my voice, and a spring in my step is a fatigue that runs straight through to my bones. I get through some days by sheer will. Then there are the days that I don’t function at all. It’s just me, my blanket and Netflix.
I miss the old me. The me that this photograph represents. The me that used to go from morning until night with endless energy. The me that could ride in the car to the store and not have to get out slowly with a limp because my joints have stiffened during the short journey. The me that did not have to think ahead about the week before me, how much energy my activities are going to require, and how much I need to rest in order to accomplish everything.
I have, however, embraced my new normal. I try to focus on what I can do instead of my limitations. There is still a me that is in this photograph. It’s just a different me. And this new me is deceptively fabulous. Why you ask? Despite the fact that my aching feet carry around a tired body, they also carry me to a job that allows me to work with people that I enjoy. Despite the fact that my body feels pain and fatigue, it is still able to care for my family, care for my home, and cook meals that nourish body and soul. And despite the fact that my eyes are struggling to stay open sometimes, they can see a world of possibilities for my future.