Stepping Up and Owning Multiple Sclerosis Move Forward with Confidence!

Embracing Change Navigating Life with Multiple Sclerosis

Living Life to the Beat of Multiple Sclerosis

By Patsy Wheeler, as told to Keri Wiginton

In 2019, my brain MRI showed some unwelcome visitors: lesions. The doctor broke the news that I had relapsing-remitting multiple sclerosis (RRMS). Suddenly, everything made sense—the facial numbness, the double vision, and that constant room-spinning sensation. Talk about a rollercoaster ride!

At first, I couldn’t help but compare myself to others with MS who seemed to be doing just fine. Truth be told, I was a mess. For a good six months after my diagnosis, I found myself crying on the floor, desperately trying to gather the strength to get up. It was like my body had run out of batteries.

Those early days brought me to the brink, but I refuse to let RRMS break me. How did I turn things around? By learning to live life with this disease—not against it.

My newfound perspective has certain limitations. For instance, I’ve discovered that indulging in a poor diet leaves me feeling fatigue for days. And multitasking? Forget about it. But rather than lamenting these restrictions, I’ve realized that accepting and embracing them has made my world a whole lot brighter.

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How I Bounce Back When MS Knocks Me Down

Most days, I feel pretty good, but then come the unexpected symptoms of RRMS—fatigue and vertigo. It’s like they have a special radar. Maybe one day I wake up feeling like I’ve had zero hours of sleep, and on another day, I have a mile-long to-do list only to see my energy fizzle out. Suddenly, I feel like I’m on a never-ending merry-go-round or a ship in rough waters. It’s a brick wall that knocks me off my feet.

During these moments, I’ve learned to take control and find ways to regain my balance. Sometimes, I’ll have my husband bring me some celery juice. I’m not sure if it lowers inflammation, but it makes me feel good. Plus, it seems to boost my energy levels and clear away the brain fog.

Losing my dear father in December 2018 may have been the trigger for my RRMS, but I keep his spirit alive by surrounding myself with pictures of him and talking to him. It brings me comfort in difficult times. When I write, I allow the music to be my background melody. I don’t fuss over full sentences—just words or phrases that express what I’m feeling at that moment. It’s a therapeutic dance of thoughts and emotions.

If I hit the wall while at work, I’ll take a break and stroll around the building. If necessary, I’m not afraid to reach out to a coworker for support. It’s perfectly alright to say, “I can’t handle this right now.” Take one recent scenario at my call center job for a light company. Sometimes, clients need services for multiple buildings, and the workload becomes overwhelming. Instead of crumbling under the pressure, I’ll ask a colleague to step in and handle the call. It’s about recognizing and embracing our limits.

Finding Joy in Life with RRMS

It took me a while to accept the idea of strong medication as part of my journey with RRMS. However, I soon realized that disease-modifying treatments (DMTs) are essential for preventing the progression of RRMS. Now, every five months, I receive a DMT that keeps my symptoms in check.

But medical treatment is just one piece of the puzzle. I’ve discovered that music and dancing are my No. 1 healers. Through dance, I not only exercise my physical body but also find solace in the rhythm. When I’m feeling low, I’ll put on a song that my mom used to sing to me or my son performed at his elementary school talent show.

Let me tell you about my fantastic MS community. When I experience something that nobody in my household understands, I have a friend who’s there to vent to. She responds immediately, no matter the hour of the day or night. I might ask, “Ever had one of those days when you want to clean everything and get your whole house in order, but you physically can’t move?” She’ll reply, “Do I ever?” And thus, a good conversation begins—a shared understanding of the MS journey.

Diet Shifts for a Better Life

I’ve kept a food journal for a while now, which has helped me identify problem foods. As a result, I’ve limited dairy products and cut out bread and gluten from my diet. Don’t get me wrong; I still enjoy the occasional indulgence in macaroni and cheese or a Philly cheesesteak sandwich. However, within an hour, the heavy fatigue kicks in, and my head feels like it’s carrying the weight of the world.

My go-to meals are usually vibrant salads—with chicken, steak, or taco fixings. Sometimes, I opt for a meatless option and load up on nuts instead. Other times, I whip up a fruit smoothie packed with protein to keep me feeling satiated. These healthy choices keep me energized. I can work a full day, come home, and still have the vitality to cook for my family or join them for a movie night.

But let me indulge you for a moment, and we’ll talk about what happens when I deviate from my eating plan. My birthday and Thanksgiving both fall in November, and last year, I decided to let loose and eat whatever I pleased on those two days.

On my birthday, we had a charcuterie board party. Picture this: a movie board with popcorn, M&Ms, and various snacks. Then there was a chicken and waffle board, and even a build-your-own baked potato station. I told everyone not to worry about my dietary restrictions—it was a day to savor without restraint.

But two days after my extravagant birthday festivities, I crashed. I had to take a day off work because I simply couldn’t function properly. The same story unfolded after hosting a grand Thanksgiving feast. I felt exhausted and unable to do much for days. It turns out that indulging in all my cravings was a recipe for disaster. However, I quickly learned my lesson. Within a week of returning to my gluten-free, nourishing meals and snacks, I bounced back and felt fine again.

Moving Forward, Second by Second

Some people say they take life day by day, but for me, it’s second by second, even hour by hour. Yet, I’m grateful for the unwavering support system that sustains me. My son and husband have my back, alongside my sister in Houston and my mother, who is right here in Minnesota.

In addition, I’ve found incredible comfort in joining the MS Society and connecting with support groups on Facebook. MS may have turned friends into strangers, but it has also transformed strangers into friends.

To top it off, the colleagues I work with are an amazing bunch who get it. Even my boss took it upon herself to research my condition so she could better understand and support me at work. It’s a wonderful feeling.

My hope is that one day I can provide the same kind of help and support for others that my community has given me. If you’re living with MS, remember this: There is help out there, not just for you but for your family as well. Don’t give up. Don’t allow this disease, or any other, to dim your spirit. Remember: You have it, it doesn’t 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.

Hey there! Thanks for taking the time to read my story. Living with multiple sclerosis has been a wild ride, but I’ve learned to adapt and find joy in even the toughest moments. If you’re going through a similar journey, remember that you’re not alone. Reach out to the incredible MS community and find the support and encouragement you need. And never forget, you have the power to live life on your terms, MS and all. Keep that spirit shining bright! 🌟