MS: The Death of My Dreams
We all have dreams growing up. So I set out and made them all come true. Then multiple sclerosis killed my dreams.
In the time of my dreams, I felt like I was living a nightmare
After finishing college, I married the man of my dreams, worked the jobs of my dreams, made the money of my dreams, and traveled the world. After having two children, one girl, and one boy, as I had dreamed, I began to have strange symptoms. Physicians were condescending when I complained of falling asleep while driving, exhaustion, migraine, and numb legs. They told me I worked too hard, had “truck driver syndrome” (explaining the numb legs), and was probably depressed. Explaining that I had nothing to be depressed about because I was living MY dreams, but they still put me on medication. Physicians MADE me feel crazy. So, I went to a psychologist to learn relaxation techniques. Even my husband thought I was crazy and complained about my constant napping at home, falling asleep during movies, and riding in the car. There have even been times I was accused of taking drugs.
And then I received my diagnosis
Finally, after many years of suffering and letting them think I was crazy, I lost eyesight in one eye while driving home. An optometrist discovered optic neuritis and sent me to a neurologist who still claimed I had fatty tumors from birth. However, I had an MRI from my teenage years which showed zero fatty tumors. Several neurologists later, I found someone who compared the two MRIs, ordered a new one, took a spinal tap, and gave me a diagnosis. My husband apologized for judging me for always being tired. Over the years, I’ve taken four different medications. Usually, they wear off over time. In the beginning, I kept working. I needed to work. Working, earning, and supporting my place in the world was my dream, never wanted to be supported by anyone, never wanting to need someone. Multiple Sclerosis killed that in 2006 when I flipped my car 6 times after falling asleep.
That accident changed everything for me
Homebound is my life now, relying on my husband. My body has betrayed me. Name something that can go wrong with MS, and I’ve been there. Physically unable to walk at times, unable to talk or swallow at times, losing control over bladder and stomach at times, intimacy problems, thinking problems, anxiety, judgment from others - who always think you are faking because you look “fine” has been my life. After 18 years of silence, I started speaking out. For the past four years, I have explained without excuses and apologizing. I wear sneakers everywhere I go. I keep a walker in the back of my car. For three years, I was home-bound and scared to leave the house because I felt so much. Also, for the past four years, I’ve begun to argue with my physician, telling him what I want.
I took charge and advocated for what I needed and wanted
A year ago, I finally talked him into letting me try Ocrevus. It has made a world of difference in my life. Instead of leaving the house once or twice a week, I can go four to five times a week. Also, I’ve begun to dream again. What if I could work again, give back again? What if I could give back to the community again like I used to? What if I could travel again? That is MY dream, to be productive and my old self. Many embarrassing moments have been left out, but you all can imagine. Now you know my dream - to return to life before Multiple Sclerosis - a productive, functioning fun life full of everything I used to be able to do before Multiple Sclerosis stole everything from me. Life is full of joy through my children and grandchildren, but I still want more. - Suzanne
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