My 36-Year MS Journey: Strength Love and Joy

A personal story about living with MS. I remember the day I was diagnosed with multiple sclerosis like it was yesterday: December 9, 1990, just one year after I was married. That day began my 36-year MS journey: strength love and joy, and honestly, I never saw it coming. Over the years, I’ve learned how to live with Multiple Sclerosis, manage my MS symptoms, and build a full life despite this unpredictable chronic illness.

We were decorating for Christmas when the phone rang. My husband answered and came back to me, a mix of worry and determination on his face. He said, “You need to listen to everything the doctor says. We will get through this.” And just like that, I knew I wasn’t alone.

My 36-Year MS Journey: Strength Love and Joy

Sharing my MS journey isn’t to scare anyone or ask for sympathy. It’s about sharing my own experiences, how I’ve learned to live with a chronic illness, and how I’ve figured out ways to keep going even when it’s scary. Trust me, I have my days, and yes, I get frustrated. But I hope that by sharing, someone out there will feel less alone.

My first neurologist told us that 98 percent of marriages where one partner has MS end in separation or divorce. But my husband said to him, “I’m not going anywhere. She’s the love of my life.” His unwavering support has been the foundation of my strength every single day.

Living With Multiple Sclerosis for 36 Years: The Day Everything Changed

Even in those early days, I worried about my quality of life. I feared I might wind up in a wheelchair. I had always had a healthy lifestyle filled with physical activity, and yet hereI was facing a diagnosis of an auto-immune disease affecting my immune system. If that makes sense, it felt impossible.

During the first year, my husband would wake me up at 4:30 a.m. before leaving for work just to make sure I could stand and move. I had a fear of not being able to stand and being alone. Those small routines became lifelines, little lessons in perseverance that still guide me today.

Early Symptoms and My First MS Flare-ups

My MS flare-ups began with numbness in my torso. It would come and go within a few weeks. I told my family members, John, and our family doctor. “Something isn’t right.” Everyone figured it was stress. I said, okay, and then it happened again. I finally said enough, I went back to my healthcare provider and insisted something wasn’t right.

After a physical exam, I was referred to a consultant neurologist. He immediately understood what I was describing. Finally, someone got it.

An MRI and bloodwork followed; luckily, I didn’t need a spinal tap. Lyme disease was considered because it can mimic MS and affect the immune system. During my first year, I experienced optic neuritis in my right eye. Double vision and optic neuritis are common MS symptoms, though not absolute. Luckily, mine was short-lived.

Over the years, I’ve learned MS symptoms are unpredictable. Some come during MS flare-ups, some fade, and some linger. It’s part of the challenge of living with a chronic illness.

Treatment, Clinical Trials, and the Only Way Forward

A year later, after final clinical trials, the first FDA-approved drug was available. I signed up for the lottery and got chosen right away. I was conflicted and happy there was finally something to slow the progression of the disease, but it was brandnew. No one knew the long-term side effects. I knew taking it was the only way to move forward.

The injections were rough at first, with full-blown flu symptoms every other night. We got through it. I reminded myself I was lucky it could have been so much worse without any treatment to help with MS symptoms.

Today, after waiting for clinical trials and FDA approval, I receive Ocrevus infusions every six months. This treatment has slowed the progression of the disease and has taken away some old symptoms. It’s been a game-changer and has improved my quality of life.

Mental Health, Perspective, and Protecting My Peace

Living with an auto-immune diseas affect more than your body. It can affect your mental health. Depression runs in my family, and MS has made my anxiety-driven depression stronger. My healthcare provider told me something I will never forget: “You have a choice, see the glass half full or half empty.” It wasn’t easy at first, but I chose to see the glass half full.

While support groups and the large MS community help many, I learned through my own experiences that I needed to protect my peace in my own way. Stress and MS do not get along. Extreme stress can trigger MS flare-ups, so I’ve learned to prioritize my mental health as much as my physical care.

Accepting New Symptoms and Finding Independence

Over time, new symptoms developed in my right leg and right arm. I went to physical therapy. I was advised to use a cane, but it didn’t help much. My MS center specialist suggested a walker. I was mad at first. I was fearing my worst nightmare was coming true.

I eventually got a rollator with a seat, and it became my best friend. It gave me independence. I unload the dishwasher, put the dishes on the seat, and put them away. I decorate for the seasons, storing ornaments and bottle brush trees on top and in the basket. I bake, cook, and keep ingredients secure in the basket. My walker didn’t steal my joy; it gave me independence.

Physical Activity, Lifestyle Change, and Quality of Life

Physical activity has always been part of me. My abilities have shifted, but I continue daily movement. I discovered Pilates 20 years ago, and my reformer is my “daily physical therapy.” Stretching and strengthening my muscles protects my spinal cord, improves mobility, and supports my quality of life.

This lifestyle change is crucial. Movement helps manage MS symptoms and maintain strength in my right leg and right arm, and allows me to keep doing what I love.

The Thing I Miss the Most

If I had to choose the one thing I miss most of all from having a disease that affects my immune system, it would be this. I miss going for a walk with my husband and holding hands. This seems small, but I miss it.

The tears don’t come anymore. The main thing I feel is frustration. I went from a person who moved fast and could do everything. Now it takes longer to do most things, and it’s very frustrating. I remind myself that things could be so much worse, and I try not to take the things I can do for granted.

Living With MS in the Heat

My MS is affected by the heat, and summer can be tough for me. Extreme humidity can make me unsteady and sometimes makes me feel like I have a minor case of the flu. Even with central air conditioning, I still feel it, and many people wonder why.

I mentioned this to my MS doctor, and he explained our homes aren’t air-tight. The humidity rises from the ground and makes its way inside, and that can affect me. Many people don’t understand how heat affects some with MS.

Being outdoors when it’s humid can’t happen for me. Some people with MS struggle with the cold, but I’m the opposite. I wish it were cold all the time. I feel my best from deep fall through winter. That’s when I’m at my strongest.

When parties and gatherings are held outdoors during the summer, I may not be able to attend. Through the years, some family members and friends have not understood this.

So, if you go through these struggles, know you are not alone. Don’t feel bad or the need to explain. Doing what protects your health is what matters. This is not in your head; this is the real part of living with MS.

Thirty-Six Years Later

MS brought new symptoms, old symptoms, and occasional MS flare-ups, but it has never stolen my joy. Thirty-six years later, I can look back at my 36-year MS journey and see more than a diagnosis. I see resilience, growth, and a marriage that defied statistics. My husband and I will have been married for 38 years in April.

I still decorate for Christmas. I still bake. I still move my body every day. I still choose the glass half full. Living with multiple sclerosis for 36 years taught me the strength I never knew I had. It’s a story about love, faith, perseverance, and choosing, every single day, to live fully.

Final Reflection and Encouragement From Me

I hope that sharing my 36-year MS journey: strength love and joy and own experiences of living with a disease that affects the immune system, helps someone else facing chronic illness feel less alone. Making a small lifestyle change isn’t a weakness; it’s a strength, and it’s how we keep fighting the good fight every day.