The newest research says that there are 1,000,000 people in the U.S. living with Multiple Sclerosis. I am one of them, and here is my story:
I’ve been diagnosed with MS since my mom’s birthday is 2005. I recently found a letter from my doctor requesting an MRI for me because I was experiencing Optic Neuritis symptoms from January of 2003.
Like many people who are diagnosed, my first thoughts were that my life was over! I had wanted to try out for Survivor or some other challenge TV reality show with my best friend and I knew that thoughts like that were out of my picture! I got surly with the people who loved me and became kind of depressed. Then everything for me returned to “normal” and MS became just another part of life. Like my obesity. (I was what my primary care physician called morbidly obese, and fad diets, fits and starts of exercise, and no will power had no impact on that.)
I went through the next 7 or so years with my head stuck in the sand. Well, not really, because my neurologist at the time warned me against going to the beach. It seemed that two of my early relapses occurred immediately after a beach vacation, and my neurologist chose to focus on the heat that accompanies the sand and sea as a reason, instead of the fact that I wasn’t as regular as I should have been with my disease modifying drug. I did what I wanted and didn’t really think about MS.
I got married to an amazing man. I refereed roller derby. I went out with friends. I quit going to the beach. I kept working.
That all changed about 3 years ago. At that time I started having some difficult concentrating at work. I would burst out crying or use the bathroom on myself. I forgot some of the steps to regular work functions. Since my job required a lot of attention to detail and focus, my work quality began going down hill quickly.
I talked to my HR department and it was determined that it might be time for me to step away. We thought it might just be a little while, but my cognitive issues never seemed to improve and over the past few years my vision, gait, balance, bowel and bladder function, fine motor skills, and ability to communicate verbally have all declined. Though I have been able to maintain a 80 pound weight loss by modifying my diet and keeping up a regular exercise routine. I have ridden over 4,000 miles on the exercise bike. I no longer overindulge in dairy products. I try to stay away from soy and processed foods. My sugar intake is negligible now.
I have also been lucky enough to have moved to Seattle, WA.
Now I live less than 3 miles from a beach. I don’t worry about the heat and humidity here. My stepdaughter is involved in roller derby. I can go virtually anywhere thanks to public transportation. I also have an amazing care team that is dedicated to making my life with MS the best it can be! I think that should be a focus for all of us with MS or any chronic illness. Life is precious! If I can help anyone see that as my life continues to change, that is what I would like to do!
You have an MS story too. If you are visiting this site then you have MS or you know someone with MS, or in some way your life has been affected by this dreadful disease. We would love to hear your story, and it would probably help you and others to tell it!