We often talk about the “summer slide” when the heat wipes us out, but winter is just as complicated for our community. Some of us are celebrating the drop in temperatures, while others are dreading the daily pain. It really shows how different MS can be for everyone. We are all just trying to figure out how to handle the thermostat without losing our minds.
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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.
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.
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.
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.
As the school year has officially started, going back to school can be stressful for some families. Students may be battling stresses associated with academic performance, peer pressure, social anxiety, etc. On the other hand, parents are anxiously hoping that their children will have a productive year at school. It is important to set realistic expectations for your child and be prepared to anticipate challenges along the way. If you are a parent with MS, fatigue and exhaustion can hit any time. Planning and being organized is the key.
Here are some tips that can help alleviate stress associated with the transition back to school:
Continue readingLife with MS can be full of ups and downs. Some days you feel strong and independent – others, you may need a little extra support. That’s completely normal. No one is meant to carry everything alone – MS or not.
Having a reliable support system – a personal safety net – can make daily challenges more manageable and help you feel more grounded, emotionally and physically. Whether you’re newly diagnosed or years into your MS journey, it’s never too late to build or strengthen that circle of support.
Continue readingBy Samuel Fitch
When you think of a safety net, what comes to mind? Is it a circus act—a high-flying trapeze artist soaring through the air or someone being launched from a cannon, hoping to land softly?
The truth is, safety nets come in many forms. At their core, they are tools that provide security, comfort, and confidence.
Continue readingBy Nana Opong-Owusu
They say the habits, values, and choices we’ve planted in our past, shape the garden we stand in today — the decisions we’ve made, the habits we’ve formed, the passions we’ve nurtured, and the values we’ve carried quietly in our hearts. I didn’t appreciate these types of thoughts as a child, but as an adult I oftentimes find myself reflecting.
Growing up, I was always drawn to movement. Sports weren’t just a hobby — they were a way of life. Whether it was the freedom associated with biking around the city with my childhood friends, the camaraderie of my basketball teams, or the adrenaline of soccer tournaments, exercise and movement have always grounded me. Now as an adult, I see it gave me structure, perseverance, and most importantly, a familiarity with pushing through adversity. But alongside that physical drive, I’ve always carried something else: a caring heart. A giving heart.
Continue reading“How are you?” is a standard greeting among friends and acquaintances. It can be a societal expectation or norm. Answering when living with a chronic disease like multiple sclerosis (MS) is anything but simple. Those with MS are rarely the standard answer of “fine.”
MultipleSclerosis.net published an article about navigating the “How are you” question with MS. The article resonated with many members, and it generated a number of comments! Here are some community insights.
Continue readingBy Samuel Fitch
This is my first blog post—so I’m hoping readers will extend a little grace. I’m 44 years old at the time of writing, and lately I’ve been reflecting on the last two decades of my life. One question keeps coming to mind: Would my 24-year-old self be proud of the man I’ve become and the career I’ve chosen?
At 24, I was newly married—Jessica and I had tied the knot in 2003. We were less than a year into marriage, expecting our first child, and I was working full-time at my family’s restaurant. We hadn’t bought our first home yet, but I was riding high on love, youth, and big dreams. At the same time, I was still dealing with some self-destructive habits—drinking, gambling—trying to figure out who I wanted to be as an adult.
Fast forward twenty years, and life has taken some sharp, unexpected turns. Jessica and I have grown stronger together. We’re now parents to four incredible children—three daughters and our youngest, a son. But that early vision I had for my career didn’t quite pan out the way I imagined.
Continue readingBy: Emily Carlin
Understanding life with a chronic disease diagnosis is a long-term experience. For me, it took years to come to terms with the fact that I have MS. The journey was not easy but looking back I am proud of myself for how I handled that situation so early in my adulthood.
For some background, I was 23 when I was diagnosed with MS. Unfortunately, I am very familiar with how this condition can impact your life, as some of my family members have lived with MS for many years. To write this piece, I’m going to take you on a little journey with me. Join me as I take you back to the time when I was first diagnosed as I pretend to take myself out for coffee as the 35-year-old woman, wife, and mother I am now.
I asked my younger self out to coffee. She showed up with glowing skin, long hair, vibrant, and full of life. She was also well rested (darn, I was jealous of that, being I’m now a mom of two toddlers). She asked me how my day was going with a cheerful smile. I paused for a second, I looked right in her eyes and told her she was beautiful before I answered. I softly smiled, and told her my day was going well, but I had some things I’d like to share with her.
Continue readingBy Stacie Prada
March is MS awareness month, and it’s a good time to reflect on the lessons I’ve learned while navigating life with multiple sclerosis for 16 years. Of all of the lessons I’ve had to learn, the hardest has been accepting my MS is not just my problem.
When I was diagnosed with MS, I firmly wanted to be able to deal with it myself. I saw it as my problem, and I didn’t want it to affect those around me. I saw it as solely my responsibility, and I thought it would be unfair for me to let it burden anyone else.
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