–A mom living with Dystonia and Hemiplegic Migraine
Dystonia is a frustrating condition that many people do not understand. I also happen to suffer from hemiplegic migraines. Like many migraineurs out there, living in a fog, constant body aches, and some other unexplainable symptoms are quite frustrating. Every day is an unpredictable day for those of us who suffer from chronic illnesses, not knowing whether we will walk, talk, or able to plan the days ahead of us.
For the past few years after my diagnosis, stress was high. The thought of being a burden to my spouse haunted me. The loss of my ability to plan activities with family, schedule meetings at work, or simply jump in the car and go somewhere left me feeling defeated. I lost my independence, and my conditions forced me to take a long break.
I quickly realized that I have to find ways to occupy my time and not focus on my condition, after all, chronic illness doesn’t define me. Whenever I could not move around from dystonia, I sat on my recliner and let my mind wander. I am not a writer, but I love to create stories; I have a broad imagination! When I was younger, I would write poetry even though I did not know-how. Some were so bad only, I could understand. I also enjoyed writing song lyrics. I wrote about happiness, sadness, and pain; whatever came to mind. However, when migraine hits, I had to learn to accept that I have my limitations.
When able, writing, whether it turned out to be good or bad, gave me a sense of peace and accomplishment. Whenever I felt discouraged, writing would always lift my spirits. I remembered the feelings writing brought me when I was younger, and I started writing again. Whenever a dystonia episode would come on, instead of fighting and getting frustrated, I picked up my laptop, and I wrote. I wrote about anything, whether it made sense or not, I wrote!
Writing, unlike my conditions, gave me a sense of control. I could be whoever I wanted to be; I could be a famous author or the queen of England. I could be wherever I wanted to be without leaving home, perhaps sipping piña colada at a beach in Jamaica. In my writings, I could feel any emotion; I could be sad; I could be happy. I could be excited; I could also be angry. I often wrote about how angry I was for being sick all the time and to my surprise, it somehow made me feel better. Writing made me feel invincible. Because writing allowed me to express my emotions; all kinds of it, it gave me a great sense of satisfaction; relieving stress and frustration.
Writing stories was a hobby that turned out to be therapeutic for me.
Even though my conditions forced me to quit my job and stay home, it also opened new opportunities. As a result of the unexpected halt dystonia and hemiplegic migraine brought to my life, I learned to publish a book. “Believe,” a faith-based, Christmas book was published in 2017. “Good Morning, Mirror!” a children’s book about the importance of positive self – talk followed in 2018. Perhaps the best thing that came out of all these, was that I was able to help other moms with chronic illness navigate their days while raising their little ones. Thus, I was inspired to write another children’s book that shows how strong moms with chronic illness are. “Wonder Mommy!” is a sweet tribute for mommies with chronic health conditions. The book reminds little readers that even when things are tough, Mommies are a Wonder!
Writing brought out the creativity in me; it has given me an outlet to release my emotions and calm my daily battle with my conditions. Writing helped me managed stress and gave me a new perspective on life. It is not easy, there are times when writing is not possible. Whenever a migraine hits, there is no way in the world, I’ll be able to write. It is quite challenging to think and remember simple things let alone with words or stories; this is when I allow myself to relax my brain and recharge. It is always good to remember that it’s okay to rest or to take a break, and that it’s okay to ask for help. It is good to find something you can do to manage the stress any chronic illness brings. For me, I know when things get better, I will always have writing to go to and help me brighten my day.
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