Amy Rowell, age 36, was diagnosed with multiple sclerosis in her early 30s. In retrospect, she realized that her very first symptom had occurred 10 years earlier, when she was unable to pick up an 8-pound cat when working in an animal shelter. Since her diagnosis, she still gets frustrated when she has a bad day, but doesn't let MS define her or dictate her life.
I was diagnosed with multiple sclerosis when I had just turned 31, but in hindsight, I had been having symptoms since I was in college. Many people hop from doctor to doctor trying to figure out what their symptoms mean; I wasn't diagnosed because I created excuses for my symptoms.
I clearly remember the first time I had a symptom. I was working at an animal shelter and reached into a cage to get a cat. It was only about 8 pounds, but I couldn't move her. I just couldn't pick her up. It wasn't like I was paralyzed, but my arm just was not able to do the movement that I was telling it to do. I attributed this to a pinched nerve. I was so young and the symptoms would go away or improve with time so I didn't think there was anything seriously wrong. I might have a bladder issue or some arm weakness or leg pain, but they meant nothing on their own.
It is a psychological game you play with yourself. It gets easy to dismiss symptoms and make excuses for them. When you are in your early 20s, you don't ever think it could be something like MS. The symptoms that finally took me to the doctor occurred in early 2007. I started feeling hazy or clouded. My movements weren't quite right and I was really groggy. It wasn't like anything I had experienced before. My husband was out of town, so I called my mom for advice. She said to rest and call her if I didn't improve. That night, at dinner, I was using my fork and completely missed my mouth. The next morning, I did the same thing with my toothbrush.
I called my primary care provider the next day and got right in to see him. He sent me to a neurologist who did an MRI that found two suspect lesions. Because I was so young, he sent me to a specialist. I had a diagnosis within six months.
Finding out I had a condition that I would face the rest of my life and one that generally gets worse was overwhelming to say the least. Hats not even a strong enough word. But I'm the perfect middle child; I'm a fixer and a problem solver. I liked doing research and overcoming obstacles and so initially I thought I would immerse myself in support groups and seminars and workshops. I remember the first seminar I went to on living with MS, which was given by local health professionals. It was raining and my husband dropped me off at the door. By the time he had parked the car and got back to me, I told him we needed to leave. I wasn't emotionally ready for it. A lot of the participants were using canes or walkers or wheelchairs and it hit me that that might be me one day and I wasn't ready for it yet.
Now, five years later, when I have symptoms or a bad day or days, it is still so incredibly frustrating. But I decided it wasn't going to define me or dictate my life. I would just have to manage it and be aware of different circumstances that I go through. For instance, I'm really sensitive to temperature changes. Heat really knocks me out and turns my body to Jell-O. We have really hot summers here and even things like a long shower or drinking hot chocolate or soup can affect me. So, if we go for a walk or bike ride or go somewhere like a fair, I always have ice packs that you can squish to get cold. I have a cooling vest that I can recharge. I just have to make sure I have a way to cool down.
I am the executive director at the Milwaukee Animal Rescue Center, and I had one doctor suggest early on that I cut back at work. I knew that would mean shutting things down. If I had another job, it would probably be easier to stay in bed when I need to, but the animals don't care if I don't feel well. Knowing there are people counting on me inspires me to be at work even when I am not feeling my best. I have a really good group of volunteers and they know that if I can do something, I will. If I need to ask for help, there are always people there to help me out. I have a lot of support. My sisters and mother live nearby and I have a lot of great friends. You learn very quickly whom you can depend on and who will help you without having to repay them every time. I was at a restaurant with a friend once and I knocked over a glass. Sometimes I do that or drop a fork and you can look intoxicated. I looked over at my friend and sighed and she knocked hers over and we just laughed.
As told to Tammy Worth