By Ann Marie Johnson, told to Shishira Sreenivas
I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) on New Year’s Eve in 2002. I was 32 years old. At that time, I had just started my career in Brooklyn, NY. I had just graduated from graduate school and had just started my new job, and I was an independent woman. I was always on the move. It’s funny because people could often hear me before they saw me. I am a petite woman who wore 5 inch stilettos. Any day you could hear the clackity-clack as I walked down the street or down the hall. Life was pretty good.
One particular day, while I was at work, I noticed that the pen I was writing my notes with kept falling out of my hands. At first I was like, OK, what’s going on here? But it continued. I started feeling these funny sensations inside my body. My supervisor was with me that day, so I said, “Look, I’m not feeling well. Something is wrong.” She let me go home and told me to finish later.
When I’m not feeling well, I make a cup of tea. So I did and fell asleep. When I woke up, the funny sensations had moved to the waist. It was like pins and needles when your hand falls asleep. I also had numbness and my legs wouldn’t move. I fell to the ground when I tried to move.
Fortunately, my roommate came to help me and took me to the emergency room. There, I spoke to the neurologist. Advance a little. After a series of exams, tests, lumbar puncture, electrocardiogram and a long trip to the hospital just before Thanksgiving, more than 2 weeks later, after more checkups and only a few days after my birthday, I have been diagnosed with MS.
I didn’t know much about it at the time. All I knew was that Montel Williams and Richard Pryor had it. And my thoughts were: What does this mean to me? I was just a poor girl from Brooklyn, NY. I have no money, I am not married, will anyone want me? Would I be able to have children? Will I be able to go back to work? These were the things swirling around in my head.
Use assistive devices and find what works for you
As I learned to live with MS, I also learned what it would mean for me. What does this mean for my walk? For that I have walking sticks. I use a collapsible cane, and I have one with wood carving.
As for the emotional aspect of this disease, I thought to myself that if I had mobility aids, I would be beautiful with them. So I bought a leopard cane to match my leopard print shoes. For the holidays, I have a black and white cane. I also have my African queen cane. So instead of people hearing me with the clack-clack-clack of my shoes, now they heard me because of the clack-clack-clack of my cane.
When I have good days, the cane stays in the car. On days when it’s a bit difficult, I take it off.
Strategize and plan your day ahead
Different symptoms will certainly remind you that you have MS. And then depending on what you do in your day, you have to strategize. Because of my fatigue, I don’t function very well early in the morning. Anyone who knows me, like my friends, knows, “Don’t call Ann Marie to go anywhere in the morning!” Because I’m like a wet noodle. I am at my best in the afternoon.
I also started writing everything down, especially at the doctor’s office, because there was no way to remember everything and notify the doctor. I started writing about things like how I feel or what I eat. I would write about the time and about my temperature. From all of this, I could see patterns. Thanks to this, I was able to modify certain things in my life.
For example, I work long hours. I’ve found it’s best for me to eat small meals because if I eat a big breakfast and then a big lunch, it exacerbates my fatigue. If I have small, extended meals throughout my day, it keeps my energy levels at a point where I can function and not fall asleep at work.
MS makes me urinate frequently. I have to be careful how I get my fluids. I know I can’t have that cup of coffee in the morning and then travel to get to my destination because I won’t. So instead of having a drink, I try to drink things in one frame. That way, when it’s time to dispel it, I do it in one hit.
But again, these are changes I was able to make when I started writing and started seeing the models. I was able to make a real change in my life. However, I am still learning.
Join a support group
The first two years were spent trying to understand myself and what MS will be like for me, because everyone’s MS is different. I was looking for information and contacted the National MS Society. They helped me get into support groups. Thanks to this, I started to animate my own groups. I like to say that I took the “I” from chronic illness and added “we” and made it into wellness.
I found others like me. I could hear other people’s stories of how they got away with it or trade little cheat sheets. Find out where to get walking sticks or which pharmacies have really good walking sticks. Find social media groups or chat about the different diets people use.
It gave me the opportunity to discuss or see how this guy works with such and such a person and to have tips for living with MS. But also, I’ve heard of people traveling, or getting a doctorate, or getting a raise, getting married, or having babies. Just regular life events for people with MS. That’s the highest level of support, and it really kickstarted the feel good. It made me feel better. And when you feel better, you get better.