By Ann Marie Johnson, as told to Shishira Sreenivas
I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) on New Year’s Eve in 2002. I was 32. At that time, I had just started embarking on my career in Brooklyn, NY. I just graduated from grad school and had started my new job, and I was an independent woman. I was always on the move. It’s funny because people often could hear me before they could see me. I’m a petite woman that used to wear 5-inch stilettos. Any given day, you could hear the clackity-clack as I was coming down the street or hallway. Life was pretty good.
One particular day while I was at work, I noticed that the pen I was using to write my notes with kept falling out of my hands. At first, I was like, OK, what’s going on here? But it kept happening. I started feeling these funny feelings inside of my body. My supervisor was with me that day, so I said to her, “Look, I don’t feel right. Something is not right.” She let me go home and told me to finish up later.
When I don’t feel good, I make a cup of tea. So I did that and went to sleep. When I woke up, the funny feelings had shifted to waist down. It felt like pins and needles when your hand falls asleep. I also had numbness and my legs didn’t move. I fell to the floor when I tried to move.
Thankfully my roommate came to help and took me to the ER. There, I spoke to the neurologist. Fast forward a little. After a series of exams, tests, spinal tap, EKG, and an extended trip to the hospital right before Thanksgiving, more than 2 weeks later, after more workup and just a few days after my birthday, I was diagnosed with MS.
I didn’t know much about it at the time. All I knew was Montel Williams and Richard Pryor had it. And my thoughts were: What does that mean to me? I was just a poor girl from Brooklyn, NY. I don’t have any money, I’m not married, will anybody ever want me? Would I be able to have kids? Will I be able to go back to work? These were the things swirling in my head.
Use Assistive Devices and Find What Works for You
As I learned to live with MS, I was also learning what that was going to mean for me. As in what does it mean for my walking? For that I have canes. I use a folding cane, and I have one with wood carving.
In terms of the emotional aspect of this illness, I figured if I’m going to have mobility devices, I’m going to look good with it. So I got 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 from 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 little challenging, I’ll take it out.
Strategize and Plan Your Day Ahead of Time
Different symptoms are definitely going to give you reminders that you have MS. And then depending on what you’re doing in your day, you have to strategize. Because of my fatigue, I don’t really function that well early in the morning. Anybody that knows me, like my friends, they know, “Do not 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 to write everything down, especially at the doctor’s office, because there was no way I was able to remember everything and notify the doctor. I started to write about things like how I feel or what I ate. I would write about the time and about my temperature. From all of that, I was able to see patterns. Using that, I was able to modify certain things in my life.
For example, I work long hours. I found that it’s best for me to eat small meals because if I have a big breakfast and then have a big lunch, it exacerbates my fatigue. If I have small meals stretched out during the course of my day, it maintains my energy level to a point where I can function, and I’m not nodding off at work.
MS causes me to have frequent urination. I have to be mindful of how I get my fluids. I know I can’t get that cup of coffee in the morning and then travel to get to my destination because I won’t make it. So instead of nursing a drink, I try to drink things in one setting. That way, when it’s time to dispel it, I do it in one shot.
But again, these were changes I was able to make when I started writing and started seeing the patterns. I was able to make real change in my life. However, I’m still learning.
Join a Support Group
The first couple of years were really spent on trying to figure out me and what MS is going to look like for me because everybody’s MS is different. I was looking for information, and I contacted the National MS Society. They helped me get into support groups. Through this, I started to facilitate my own groups. I like to say I took the “I” from chronic illness and added “We,” and made it wellness.
I found others like me. I could hear others’ stories about how they are coping or exchange little cheat sheets. Find out where to get canes from, or what drugstores have really good canes. Find social media groups or discuss what different diets people are using.
It gave me the opportunity to discuss or see how this guy works with this or that person and to get tips on how to live with MS. But also, I got to hear about people who travel, or get a doctorate, or get a raise, get married, or have babies. Just regular life events for people who just happen to have MS. That is the greatest level of support, and that really sparked wellness. It made me feel better. And when you feel better, you do better.