My Journey with Multiple Sclerosis

By: Alyssa Meller, Chief Operating Officer, National Rural Health Resource Center

In late February 2009, my feet went numb. The numbness began as quarter sized spots on the bottom of my feet. I remember this clearly, as it was my birthday and a couple of friends and I were getting ready to go out dancing. By the end of that night, both feet were completely numb. They felt like heavy, heavy blocks. A week later, the numbness crept up to my waist and I needed help walking. In March, 2009, at 33 years old, I was diagnosed with Multiple Sclerosis (MS). That was one of the most terrifying moments of my life. 

Multiple Sclerosis is defined as a demyelinating disease, in which the immune system attacks the myelin sheath (the protective cover) of the spinal cord and grey matter of the brain. This causes communication difficulties between the brain and the rest of the body. It can cause numbness or tingling, weakness in the limbs, vision changes, lack of coordination or unsteady gait, fatigue, and dizziness. The cause of this degeneration is unknown, although many researchers believe MS is an autoimmune disease. There is no definitive test that will diagnose MS, nor is there a known cure for this disease. According to the Multiple Sclerosis Foundation, there are currently between 350,000 and 500,000 people in the US who have been diagnosed with MS. The most common type of MS diagnosed annually is relapsing-remitting MS (RRMS). This is the type of MS I was diagnosed with in 2009.

There is no doubt about it, MS is scary. One of my first thoughts I remember having was, “I am going to be in a wheelchair by the time I’m 40.” That negative attitude is how I chose to live my first few years with MS. I was inactive, overweight and making some terrible lifestyle choices. Now I had a something to blame it on.

I have MS.

This is the reason why I am so tired, why I can’t move, a good excuse to eat what I want when I want because at the end it just really won’t matter. I am going to be disabled by the time I’m 40, dependent on my husband to get me around, so why should I bother? This is what I thought, and because of those thoughts I used MS as an excuse to further some already destructive behavior.

MS is unfair. It is also life-changing. I have learned that yes, there can be -and are - physical limitations to this disease. However, I learned physical limitations were not my biggest challenge. My thinking was.

I imposed the limits by thinking and then believing MS was the controller, IT was the boss, IT won’t let me.

That was farthest from the truth.

IT was me.

So I started to move.

I call it my “Move More Campaign.” It began slowly, very slowly. I started to move more by always taking the stairs. It wasn’t easy. Some days it still isn’t easy. I often have to pause and ‘wait’ for my legs to catch up with me. I have to hold the hand railing so when - not if - I trip, I don’t fall. I make sure to move in a way that is smart and safe.

I folded laundry on the first floor of the house and took each person’s clothing up to their room one at a time. I learned how to mow the lawn. My dad always said, that was what the boys were for. Well, not anymore! I began walking for additional movement. I just kept adding more movement. I purposely don’t call it exercise. It is movement, pure and simple. I ask myself, what can I do in this moment to move more? And then I do it.

By summer of 2012, I decided I wanted a new movement challenge. I harbored an inkling to train and run a 5k race that fall. I shared this thought during an appointment with my neurologist. He looked me in the eye and said, “You are not limited in anything you can do.” That statement had a profound effect on me. I teared up. Those simple words helped empower me to go forward with this new goal. The power and influence providers have on a person’s motivation is enormous. 

With support from family, friends and providers, I was off and running. Slow, yes, but I did it. My training was simple. I’d set a goal that I would run for 10 minutes and then walk up to 30 minutes. As those 10 minute increments became easier, I would gradually increase that time by five minutes until I was running for an entire 30 minutes. I did this three to four times a week. My goal was to run the race in 30 minutes. I completed it in 29 minutes and 44 seconds!

MS is life-changing… in a good way! Since October 2012, I have run many races, including three half-marathons. Moving more helps me beat through the tiredness, the lows and the anxiety of the current moment and the future. It resets my brain, helps me focus and move forward into a better moment.  

There are days when I think or even shout out loud, “I can’t do this anymore. I’m sick of trying. Why do I even bother?” After one such outburst my nine year old son reminded me to stay strong. “Mama, I’ve been thinking about this. If you keep saying you can’t do something, you never will. If you say ‘I can do it’, you always will.”

Sometimes it is my daily or even hourly mindfulness and dedication to showing MS who’s boss or sometimes the reminder comes from my kids, but as I begin training for my fourth half marathon, I am reminded that MS doesn’t need to stand for Multiple Sclerosis, but to me it stands for Made Strong ™.

March celebrates and focuses on MS awareness. I use the word celebrates and I’m not sure if this is the right word, but for me it fits with what I’ve accomplished and continue to celebrate each day. We need more than a month. We need MS awareness at our forefront every day. As people with MS learn to physically and mentally cope with this terrible disease, I hope that health care providers will support and encourage us as we learn to cope and more importantly how we choose to LIVE each moment. I want more providers to be like mine  and not to focus on, “What’s the matter with you?” but ask ”What matters most to you?”.

I recently celebrated the 11^th anniversary of my 29^th birthday. I am almost as fit now, 40 with two kids, as I was playing soccer in college…. Almost. Thinking back to my initial belief that I would be disabled by 40, I smile. This is one instance I am ok with being wrong. In fact, I cheer that I was wrong!