This is my multiple sclerosis story. Everyone’s story is different. Everyone has different symptoms and each person finds their own way to manage them. I could write an entire book on what it is like to have multiple sclerosis, every day is different; a surprise waiting to be discovered and good or bad it is always there. I have never really been one to talk about having MS. For a long time I was embarrassed or didn’t want to burden people by talking about, but there have always been questions which I am happy to answer. Sharing this story is not an easy thing to do – to talk about struggles and weakness; it is very personal and emotional for me.
I am an athlete, a mom, a daughter, a sister and a friend. I am no different than you. I was diagnosed with MS in 2010. My balance was horrible. I was exhausted, even though I was napping every day. My shoulders seemed to have a never-ending swarm of ants marching across them (that’s what it felt like). My left foot refused to cooperate in my efforts to pick it up. Worst of all (for me) was my trouble communicating. Words escaped me – I resorted to charades to express myself. People would be talking; but I just couldn’t understand them. It was embarrassing. I realized something was really wrong.
I went to my doctor with the entire list of symptoms, written out. She immediately suspected MS and the testing to rule everything else out began. There is no one definitive test for multiple sclerosis. Ultimately it was my MRI that told the story. The neurologist came in and said, “I’m sorry no one caught this earlier. You have had MS for probably 20 years. I want you to see what your brain looks like.” He pulled my MRI up and walked me through the lesions in my brain. He handed me a large amount of information and told me all of my treatment options.
All of my symptoms had me on a downward spiral – I had lost my job because I was no longer physically able to do it and to find out there was no “fixing” this was a tough blow. Throughout all of this I had said that I would do whatever it takes to get better and I meant it. It just took me awhile to figure out what was best for me. Like 2 years of continuing to get worse. I had to change neurologists and this new doctor said things had to change – my treatment wasn’t working, in fact I had been getting worse. Something clicked that day. I realized I had been surviving with MS instead of fighting it.
We had a Wii game system at home and I decided to start using it more because it has some games that encourage balance skills. I also discovered a game called “Walk It Out”. I admit it is not an exciting game. You walk to the music and collect points to “buy” things for your virtual town. I was not very coordinated – I started out with a chair in front of me holding on to the back and my 16-year-old daughter operated the wii controller directing me through town and grabbing and spending tokens. When the weather got nicer I asked a friend to walk outside with me. We didn’t go far, just in my neighborhood. I stuck it out, walking every day. After 2 months I joined a gym and discovered the elliptical. The first week I could only manage 5-10 minutes. Once again I stuck it out and gradually improved. I started using the weight machines and could really tell a difference. I lost over 60 pounds and my balance improved. I am not sure why; but I saw an ad about Spartan race and decided I really wanted to do it. I couldn’t even run, so I needed a plan. I asked my sister to help me. She was a runner and is an incredibly patient person. She worked on the mechanics of how to run with me. I had to actually learn how to get my body to do it. Then we planned for me to do a 5k on an easy flat course. She ran with me – telling me stories and trying to distract me while I thought I was dying. It was an easy jog for her. Next we did a small local mud run. I loved it. It was really hard but I loved it. That was it I was hooked. I did a variety of road and obstacle course races getting a variety of injuries along the way. I knew I needed more help so I went to the local gym and signed up to work with a personal trainer. We worked on all kinds of skill that probably seemed like a preschool class. I learned to stand on one foot, to jump over a line, step up, step backwards, eventually learning to jump up onto things and hop on one foot. I learned to lift weights to strengthen my core and improve my balance. Lifting weights has become an important part of my fitness regimen as a way to protect my bones, which have become increasingly fragile as a side effect of my medications.
I have run 4 Spartan races including earning a Spartan trifecta this past year. I have run over 2 dozen race since deciding that this was what I wanted to do. I am not racing in the sense that I plan to beat everyone else in fact I don’t even care how fast I go, most days. I am just thankful that I am able to participate. The girl that couldn’t step off a curb now leaps over fire and celebrates each finish with a cartwheel. I am reminded at every doctor visit that each day could be my last one of walking. I train and race with that deadline looming over me. Having the ability to do the things I do has not come from my MS improving. The lesions are still there. I still have saddest looking cerebellum the doctor ever saw. When I am not at the gym or at work I am usually at home sleeping. I get up at 5 every day because I have to rest in between steps of getting ready for the day, to save up energy to get through my day. I am in bed no later than 9 most nights. I sleep in whenever I get the chance. The pain that comes with MS is always there. The chest squeeze (MS hug) happens if I have things to do or not. I still slow down and choose foods that reduce my risk of choking due to muscle spasms in my throat. It is there if I am lying on the couch or if I am climbing obstacles on a course.
No matter what; multiple sclerosis is part of my everyday life. It is not my whole life. MS has affected my brain, not my heart. A heart is a mighty powerful thing that can take you places that you might never expect you could go.