Making the Most of Life After an MS Diagnosis

By Dr. Eva Jackson

Reflections on Life After Diagnosis

Over the past several years, I have had the privilege of hearing MS Warriors share their personal experiences following their diagnosis of multiple sclerosis. Their stories offer a unique perspective on how disease has influenced their lives.

For some individuals, the initial impact of MS was minimal, allowing them to maintain their routines and activities without significant disruption. However, for others—particularly those diagnosed during more advanced stages, the effects were much more profound and immediate, altering their daily lives in meaningful ways.

Despite these varying experiences, there is a shared understanding among all of us: the importance of making the most out of life while we can. This common outlook serves as a powerful reminder to cherish each moment and embrace opportunities for fulfillment, regardless of the challenges we face.

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Refresh, Rewind, Release

By Monica Proctor Wilson

Self-care is not selfish.

Self-care is self-love.

It took me many years to not only understand that self-care was not selfish, but self-care was self-love and to also accept this. Of course, I had to learn the hard way. For years, I was the person burning the candle at both ends… and in the middle. I made sure everyone else was taken care of, I checked all the boxes, and I filled in all the roles. My personal theme song was “I’m Every Woman” by Chaka Khan, which I played on repeat in my head. Say amen if you relate.

Then reality hit me. Hard. One day at work, I ran out of spoons before the day even started. I had a relapse due to complete exhaustion and extreme fatigue. After a coworker drove me home, I crawled into bed screaming “I don’t have time for a relapse!! I have to make dinner and be ready for the kids to get home to help with homework.” After taking a quick 16-hour nap, I woke the next morning to find dishes in the sink and clothes on the floor… and you know what? Life kept moving while I was resting and the world had not ended. The earth did not spin off its axis and I did not get sucked into another universe.

Building a Reset Routine

That was the “Ah-Ha” moment that I realized something had to change. I decided to take one day each month to do absolutely nothing. And when I say nothing, I mean nothing. I marked the date on the calendar so everyone knew I would not be available for events, errands, or obligations. That day was reserved for me to sleep, get a massage, binge-watch shows, or literally watch the paint dry on the wall. My body would decide.

My first attempt left me with feelings of complete guilt. It was difficult ignoring that voice in my head suggesting I was letting my family down. But after several attempts, the guilt turned into something else: a requirement that I would set for myself. A promise that I would take time to refresh, rewind, and release.

That was many years ago. My children are now grown, and my husband understands my promise to myself. But each month, I continue scheduling my mental health day because that’s what my body requires. A chance to recharge before the fatigue, stress, or symptoms stack up and force me to rest the hard way.

Why It Matters Especially with MS

Living with MS means we don’t always get to choose how our bodies feel day-to-day. But we can choose to respect our limits and plan recovery time before we crash. By putting a mental health day on the calendar, I shifted from reacting to my body’s emergencies to proactively giving it what it needs.

Your Turn

I know understand that self-care isn’t selfish…It’s self-love. It’s about survival and strength. Taking care of yourself allows you to give more to others. Remember the airline rule: mask on you first, then others.

If you’ve been pushing yourself beyond the limits, burning your candle at both ends, or just need time to recharge, consider this your permission slip to rest. I challenge you to schedule a day on the calendar that belongs only to you. No apologies. No guilt. It may be difficult, and the first attempt may only last 3 hours. But try again and again until you are able to refresh, rewind and release. You have my permission.

I’m Monica Proctor Wilson, and I’ve been living with multiple sclerosis for 19 years. I facilitate a self-help group called SPEAK MS, where we Share Personal Experience and Knowledge of MS, connect, and keep each other uplifted. I’m also an MS advocate and serve on the Government Relations Advisory Council, working to make sure the voices of people with MS are heard at every level. In 2023, I was honored to receive the National MS Society’s Inspiration Award. My passion is helping others find strength, purpose, and community while navigating life with MS.

Reset with Intention: Embracing Routine After Summer

Getting back into a routine can be challenging, whether you’re returning to school, coming off a summer break, or simply craving more structure. The transition into a new season, especially back-to-school time, can feel overwhelming. But it doesn’t have to be abrupt or exhausting. It can be intentional, gentle, and even energizing.

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When Breaking the Routine Becomes Essential

I have always been a fan of organization and routines. Staying organized and up-to-date on my to-do list makes life feel manageable and productive. Having a good routine has always provided a sense of structure and control, even more so during busy seasons. But there have been plenty of times, especially as a remote worker, where my routine has felt extremely repetitive, unamusing, and tiring. When this feeling begins creeping up, it personally becomes essential to step away from my day-to-day norm and do something less traditionally productive. But first – it’s important to recognize your emotions and the signs of burnout approaching.

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Forms of Focus

By Stacie Prada

Life is full of distractions, disruptions, deadlines, and despair. Yet we go on. Sometimes we’re strong and excited, and other times we struggle. The measure of success isn’t an imaginary idea of being perfect.  Whether we lead, push, pull, or fall short, it’s success to keep showing up and trying. 

The ability to focus helps with test-taking, achievement, and success, yet what to focus on and when to focus are up to us in each moment. 

What does it mean to focus? Often, it’s paying attention, limiting distractions, and concentrating. Do I have to push so hard all the time? Maybe not. 

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Reset and Focus

By Samuel Fitch

When we think of the word reset, we often picture restarting a computer or a phone. Most problems on a device can be fixed with a simple restart. But when it comes to us—our physical, human selves—we don’t have that option. We can’t just shut down and start over.

What we can do, however, is reset.

Sometimes that means taking a few moments to clear your mind, breathe with intention, and refocus on the task at hand.

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You Are Not Alone: How to Build a Support System with MS

Living with a chronic illness like multiple sclerosis (MS) can feel isolating at times. While we can be our own support system through self-love and self-care, not everyone has strong family ties that bring support and comfort. Many of us may not have a built-in support system, and that’s okay. The good news is that building one is entirely possible. Know that you don’t have to do this alone.

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Reclaim Your Power

Being diagnosed with a rare autoimmune disorder comes with many challenges- one of the most common and often more difficult is learning to become your own advocate. More often than not, the people and healthcare professionals I encounter are not familiar with my condition, which frequently means they do not know the symptoms that accompany the diagnosis and the treatment options that work best for me. This is when speaking up for myself becomes vital.

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Knowledge is Power, and so is Self-Advocacy

Living with multiple sclerosis often means navigating a complex healthcare system, where self-advocacy becomes essential. Recently, I experienced firsthand how crucial it is to stand up for yourself in medical settings.

About 6 months ago, I made the decision to switch to a new neurologist, mostly due to the cost of my annual MRIs. I did my research and found an MS specialist 1.5 hours away and decided to give him a try. I arrived at the office, was pre-screened, and all seemed well until the doctor came in and I found myself being questioned and patronized in a way I have never experienced in a medical setting (or any setting really). Despite living with MS since 2016, doing well on the same DMT for 6 years, and working for MSAA for the past 3 years, the doctor asked me to justify my treatment and explain its benefits in detail before he was willing to continuing the conversation. I never received a physical examination, he never once asked about my lifestyle, and the entire interaction felt like a test. I guess I passed because he did end up ordering my next MRI and continuing with the same treatment path I was already on. The experience left me feeling unheard and disrespected.

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The Growth She Couldn’t Yet See

Once in a while, I face challenges that remind me just how much I’ve grown over the years. I’ve come to understand that challenges are actually opportunities for personal growth—and that some setbacks are blessings in disguise. Looking back, my younger self could never have imagined how resilient I would become.

She would be proud of how much my perspective has shifted as I’ve grown older and wiser. I used to cling so tightly to people, places, and things that I ended up suffocating the very opportunities life was offering me—to explore, to learn, and to flourish in unfamiliar territory. It was hard to say no to things that drained my energy and happiness. But over time, I’ve learned that while life can be unpredictable and full of obstacles, I have the power to choose my perspective. And today, I choose to believe in myself and trust that I can handle whatever comes my way.

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