In 2008, my smile fell. I had a new baby, a four year old, an Air Force husband deployed to the Middle East, and a doctor that informed me that I had Bell’s Palsy due to stress. Vain as I was, I took a deep breath and moved on with my life, just, without smiling. I made fun of myself. I made stupid faces in pictures. I learned to not let it bother me…much, anyway.
When my husband returned home, the entire family packed up and moved from the mountains of North Carolina to Gulf Coast of Florida. I joined a gym, made friends, my oldest child started school, and I had a wonderful house in the middle of a wooded area on a beautiful bayou. Life was good, yet something was off. I was always tired. I chalked it up to aging, motherhood, and the heat. The fatigue worsened. I was struggling with mundane tasks like scrubbing the glass top stove and washing my hair. It was during a Zumba class one day that I realized that I didn’t have either the strength or the coordination to continue. Something was very, very wrong with me.
This begins the period of time that every autoimmune disease sufferer is familiar with: visits to doctors who half listen, tests for everything that they think might be wrong that come back negative, and finally the ultimate suggestion that this problem is in my own head. One doctor called it depression, another one suggested that I spend three hours a day on a treadmill. It was demeaning and frustrating.
We moved again after two years. The fatigue lightened up and I thought, okay this was some illness that passed that they never discovered. Then the eye problems started. I couldn’t see half the time. I would tell my husband that I’m not sure if I’m exhausted or if my eyes are just so tired that I feel exhausted. Of course, the eye exam said I had twenty/twenty vision and all other tests were negative. I began to doubt myself. This endless negative inner dialogue kept me awake at night. Nightly sleep loss compounded over weeks then months. I slipped into a funk that was difficult to drag myself out of.
We moved again, this time to Colorado. Best move ever. I had a period of time where, even though I was always tired, I felt normal. I lost weight. I hiked mountains. I even smiled my crooked smile. But it crept back on me. In August of 2014 I felt the fatigue, the eye strain, the inability to use my hands, every little thing hitting me again. Something new, my right eye was drooping. I went to see my doctor, who didn’t hesitate to refer me to a neurologist. I was in his office for fifteen minutes before I heard the words Myasthenia Gravis. Testing still had to be done but there it was, my tormentor.
I was relieved. I was actually happy about being sick. I was not crazy. I also thought, six months maybe a year of pills and I will be back to normal. For a while (despite my feelings toward the prednisone) I did very well on the medications. My smile returned. I felt better. I was so confident in my complete recovery that I told very few people that I was sick. Why share? I was going to be fine.
August 2015, I returned to my home state of South Carolina for a two week visit. It was very hot, very humid, and the entire trip was very stressful. By the time I returned to Colorado, I was ill. I feel like I’ve been in a deep hole since then. I started the IVIG, my steroids were upped, and I now have meds to manage my anxiety. Every day I battle myself. I want so many things for my life that I cannot have right now. I don’t know when to push forward or when to rest. I have crippling moments of self- doubt where I feel like, a burden on my family. I worry about people getting tired of me being sick because I’m already tired of myself being sick.
I DO NOT WANT TO BE SICK FOREVER.
Our next move is in four weeks after three years in Colorado. We’re headed to Omaha this time. I already have an appointment with a specialist at the University Of Nebraska. MG is his thing and I have placed great hope on this move. At my core, I’m a dreamer, a positive person. Sometimes, that inner truth is hard to hold onto but it’s still who I am. In the harshest moments, I tell myself that it’s going to be okay, just not today. Meanwhile, I’m educating myself. I’m learning about my illness. I’m becoming an advocate for myself. I’ve opened up to the people who care about me to let them know what is occurring in my life. I’m still learning when to ask for help, to communicate when I’m struggling, but everyone in my life has been amazingly supportive. I’m not alone. I am building strengths that I can tap into when I’m victorious over MG.
– Meredith Tournay
