By SeAndrea Collins, as told to Keri Wiginton
I’m 38 and I’ve had myasthenia gravis (MG) for over 20 years. A good life is still possible. I enjoy my work as a third-grade teacher and the time I spend with my husband, our teenage son, and my friends and family.
So did I learn to pace myself with MG? That’s a good question.
Now that I’ve lived with it for so long, I can tell when it’s OK to push myself and when I need to pull back. But I overdid it a little more when I was younger. I said, “Yes, yes, yes,” when I should have said no.
Slowing Down, Not Stopping
My story goes back to 2002 when I was 17 and a freshman at Purdue University. The first signs of weakness showed up around Christmas. My left eyelid started to droop. I got double vision a couple of months later. Then I got tired just crawling into my bunk bed at night. Symptoms only worsened from there.
By the end of second semester freshman year, my arms got weak and my legs got weaker. My speech started to slur. I thought the problem was a lack of exercise, so I started going to the gym. But one day, I couldn’t walk after a workout, so my brother rushed me to the hospital.
My parents had been worried for months, and they’d already taken me to multiple health professionals. But after that trip to the emergency room, where doctors first thought I had multiple sclerosis and mini strokes, a neurologist diagnosed me with MG.
My parents urged me to take a break from school. They wanted me to stay home for at least a year. My doctor agreed with them. But I wouldn't let MG stop me from living my life, so I told them I planned to finish school. They looked at me like I was crazy, but I was insistent.
We compromised on my course load. I told my parents I would keep taking classes but would lower the number of credit hours each semester, dropping from 15 to 12. Maybe I wouldn’t finish college as fast as I’d first planned, but that was fine.
I have to admit that I pushed myself too hard at first. But who can blame me? I was in my 20s and wanted to fit in with all the young people around me. But I realized pretty quickly that I didn’t have the energy to do as many activities as everyone else, so I went to fewer parties and group events.
The good thing is age has turned me into more of a homebody. And I like relaxing on the couch under the blanket with my cat. My husband and I enjoy watching TV together or going to restaurants. And occasionally I’ll go out for a girls' night with my friends when I'm up for it.
If I know I have a busy weekend, I try to rest ahead of time. And I’ll spread out my chores and activities so I don’t tire myself out. But things don’t always go as planned.
For example, this past Mother’s Day weekend I did a little too much. I ran errands all day Saturday, and Sunday I spent time with both my mom and sister-in-law. Then a day later, I felt it. I didn’t have weakness, but I was definitely tired.
Lifestyle Changes and Myasthenia Gravis
I’m grateful to have a treatment plan that keeps my symptoms under control. I take a daily mix of medications, but I’ve also made lifestyle changes. These healthy habits not only help me manage MG, but they also lower my odds of other health problems.
One of the biggest changes involves my diet. I used to eat a lot of processed foods, including sweets and white bread. And I would start every day with a packaged cereal bar and have a microwave meal for lunch.
Now, I prioritize leafy greens, vegetables, and whole grains. I swapped my breakfast bar for oatmeal topped with fresh fruit and Chia seeds. I even bought a juicer to make smoothies. Sometimes I drink mushroom coffee.
I also try to go to the gym at least twice a week. My workout routine is pretty simple. I fast walk on the treadmill for at least 45 minutes. I used to think that exercise only counted if you’re sweating a lot, but you don’t have to do that.
Exercise can be good for people with MG, but everyone’s abilities are different. And you have to know your limits. I usually get an energy boost after one of my walks. But I won’t work out if I’m too tired. That would only worsen my fatigue.
How I Mange the Ups and Downs
Like the rest of the world, my anxiety and stress went way up when the pandemic hit. I started to experience symptoms I hadn’t had for decades. My speech slurred, and my muscles got so weak I couldn’t smile, chew, or swallow.
I knew I needed more than a lifestyle change, so I went to my doctor for help.
I didn’t feel like my neurologist at the time was listening to me, and we didn’t agree on treatment. So I found someone else. The new doctor suggested another plasma exchange, or an IVIG treatment. And after two infusions in the fall of 2021, my worst symptoms disappeared.
Mental health counseling was also very helpful during my last flare, and I still go. My therapist listens intently and gives me suggestions for how to grow and manage all sorts of problems, including some that have nothing to do with MG.
Create Your Support Network
I’m blessed to have friends and family who don’t judge or push me past my limits. They’ve all been supportive. Some even join me for a yearly walk I do with a group called Conquer MG.
If you have MG, I urge you to open up about your illness with people who make you feel safe. When I was younger, I didn’t share what I was going through with anyone except my parents and close friends.
I wish I could’ve given more people a chance to understand what was happening to me back then. But I didn’t want people to treat me like I was weak. Now, I know how important it is to tell people when I’m tired or not feeling well.
While you never know how someone will react, sometimes it’s worth it to take the risk. Because while some people may not know how to handle the news, others will be supportive. Give them a chance to learn about what you’re going through, then see what they do.
Photo Credit: Tetra Images / Getty Images
SeAndrea Collins, myasthenia gravis advocate, Merrillville, IN.