By Patsy Wheeler, as told to Keri Wiginton
In 2019, an MRI showed lesions in my brain. I had relapsing-remitting multiple sclerosis (RRMS), the doctor told me. This wasn’t welcome news, but at least it explained my facial numbness, double vision, and that constant room-spinning sensation.
I knew people with MS at the time, and they were fine. But I was really down and sad about my illness for a good 6 months after my diagnosis. My adult son would sometimes come home to find me sitting on the floor, crying. It’s not that I wanted to be on the ground. I’d been trying to get up, but I didn’t have enough energy to move.
RRMS almost brought me to my breaking point in those early days. But that simply wouldn’t happen now. Why? Because I’ve learned how to live properly with this disease.
My new life comes with certain limits. For example, now I know that eating poorly will leave me fatigued for days. And I can no longer focus on multiple tasks at once. But that’s OK. And being OK with not being OK has made everything in my world better.
What I Do When I Hit the Wall
Most of the time I feel pretty good. But RRMS symptoms like fatigue and vertigo seem to come when they want.
Some days I may wake up already feeling like I’m going on zero hours of sleep. Others, I’ll set out with a full to-do list only to have my energy fizzle out later on. I can also get this feeling like I’m suddenly on a ship or nonstop merry-go-round. And when that wall of dizziness hits, I’m down for the day.
These symptoms make it hard to move around or think straight. And, sure, I feel sad when that happens. But I’ve learned how to take more control in those moments.
When I feel awful, sometimes I’ll ask my husband to bring me some celery juice. I don’t know if it’s actually lowering inflammation, but it makes me feel good. And I always seem to have more energy and less brain fog after I drink it.
My dad passed away in December 2018, which was the worst year of my life and may have triggered my RRMS. But I have pictures of him all over the place. And I talk to him all the time, which helps me feel better.
And I write with music playing in the background. But I don’t bother with full sentences. I jot down words or phrases that I’m feeling: Strong. Irritated. Upset. How come? Trips. Vacation. Where to?
If I get that hit-the-wall feeling at work, I may take a break and walk around the building. If necessary, I’ll let one of my co-workers know I need some help. And I don’t feel bad about it. I’ve learned that it’s perfectly fine to say, “I can’t handle this right now.”
For instance, I work at a call center for a light company. Some people will need to start services at multiple buildings, and I’ll have to tell the client to wait and give me a second. And I’ll ask someone else to take the call because it’s too much for me at that moment.
Living Well With RRMS
It took me several months to come around to the idea of taking a strong medication for my disease. But a disease-modifying treatment (DMT) is the best way to keep RRMS from progressing. Now I get a DMT once every 5 months.
But medical treatment is only one way I’ve empowered myself.
My no. 1 healer is music and dancing. I use dance to exercise. But I love everything about the way my body feels to the rhythm of the beat. When I feel down, sometimes I’ll put on a song that my mom used to sing to me or that my son played in his elementary school talent show.
And I can’t say enough good things about my MS community. I vent to one particular friend when I’m experiencing something nobody in my household understands. She’ll respond right away even if I text her in the middle of the night.
I’ll ask something like, “Do you ever have one of those days where all you want to do is get up and clean everything around you and get your whole house together, but you literally can’t move?” And she’ll say, “Do I ever?” And we’ll have a good conversation about that.
Diet Changes Are Key
I’ve kept a food journal for a while, and that’s helped me pinpoint problem foods. Now I limit dairy products and avoid bread or anything with gluten.
Don’t get me wrong. I enjoy eating a good bowl of macaroni and cheese or a Philly cheesesteak sandwich in the moment. But about an hour later, I’m more sluggish and exhausted than I need to be. And my head feels overwhelmingly heavy.
My go-to meals are usually salads. I’ll eat one with chicken, steak, or taco fixings. Sometimes I go meatless and throw in a bunch of nuts instead. Or maybe I’ll have a fruit smoothie with some protein to make sure I stay full.
And when I eat those healthy foods, I feel vibrant. I can work a full 8 hours and come home and still cook a meal for my family if that’s what I want to do. And if my son and husband want to go to the movies, I know that I’ll have the energy to join them.
But let’s talk about what happens when I don’t follow my eating plan.
My birthday and Thanksgiving both happen in November. And last year, I told my husband that I wanted to eat whatever I wanted on those two days.
On my birthday, we had a charcuterie board party. There was a movie board with popcorn, M&Ms, and different snacks. Then there was a chicken and waffle board. You could even build your own baked potato.
And I told all my guests not to worry about any of my gluten-free or other dietary issues. Not on that day.
Two days after my party, I hit a wall. I had to take a day off from work because I couldn’t function very well. The exact same thing happened after we hosted a big Thanksgiving meal. I was too tired to do much of anything for days.
I’d eaten everything I wanted to, and it was just awful. When I went back to eating gluten-free and having my good fruits, vegetables, and peanuts for snacks, I felt fine in a week.
Moving Forward With RRMS
Some people take things day by day. For me, it’s second by second or hour by hour. But I have an amazing support system. My son and husband have my back. Not to mention my sister, who lives in Houston, and my mom, who is here in Minnesota with me.
I also joined the MS Society and other support groups on Facebook. I often say that MS turned friends into strangers but strangers into friends.
And I work with an amazing group of colleagues who get it. My boss even did her own research about my condition so she could help me out at work. It’s wonderful.
I hope I can one day help others the way my community has helped me. And if you have MS, I want you to know this: There is help out there for you and your family. Don’t give up. Do not allow this disease or any other disease to take over you. You have it. It does not have you.
Patsy Wheeler, 42, was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in September 2019. She lives in Inver Grove Heights, MN, with her husband and son.
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