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.

Building your Fortress

An individual going through a chronic illness like MS may be hit with a multitude of emotions like loneliness, helplessness, confusion, anguish, anger, and sadness at different points in time. The uncertainty associated with MS can be immensely stressful. Having a support system, whether it be friends, family, coworkers, or therapists, can help you navigate through the toughest times. Reaching out for help from your support network is not a sign of weakness. Rather, it shows that you have a strong support system to back you up in hard times. Below are some tips to build a strong and thriving safety net:

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Creating Your Safety Net: Living with MS

Life 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.

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Enhance Your Safety Net with My MSAA Community

Living with multiple sclerosis can bring about a number of uncertainties – from navigating symptom and treatment options to dealing with emotional and lifestyle changes. While every journey with MS is unique, one thing is universal: no one should have to face MS alone. This is why the Multiple Sclerosis Association of America (MSAA) created My MSAA Community.

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Proud Memories

By Bonnie Lynn Ellison

May is a good time to reflect on myself, and what my younger self would be proud of. When I was young, I thought life was a rodeo! I competed in the National Little Britches Rodeo from 8 to 18 years old, and was proud of my ribbons, buckles, and trophies! I learned, if you got thrown off, you got back on the horse!

When I was young, I also played my guitar and sang in talent shows, from 7th grade through high school. In college, I performed with the FAB Company. We toured nationally in the early 1970’s, recorded four albums, and were contracted with the major international talent agency, William Morris. I’m proud that we wrote our own original music, songs, and comedy. We did concerts! I thought I was Taylor Swift!

I fell in love, got married, and two years later, I was diagnosed with multiple sclerosis. I was 25. It affected me like a stroke, on the right side of my body. I had never heard of this disease, so it was like an old rodeo injury to me. It took about three years to recover enough to write, sing, and perform again. And there were no assurances that it wouldn’t return. I had always been athletic and healthy. It was shocking for me, and a struggle.

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Being An MS Warrior

Being diagnosed with MS can be disheartening news for many since the road ahead can be so scary and unpredictable. If left undiagnosed, it can lead to severe disability over time.

It is of utmost importance that you schedule your appointments with your neurologists and other care providers regularly so that they can help with managing your symptoms and keeping your MS at bay. The high costs associated with the treatment make medical coverage crucial as over time, MS may unfortunately place a financial strain on individuals and families. Fortunately, there are organizations like the Multiple Sclerosis Association of America (MSAA) can direct you to valuable resources while navigating the bumps along the way.

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A Letter to a Friend: So You’ve Just been Diagnosed with MS…

Dear Friend,

I’ve been thinking about you so much since you shared your recent diagnosis of MS. I know this probably feels like a lot – like the ground has shifted under your feet – and I wish I could be there in person to give you the biggest hug. Since I can’t, I wanted to write you this letter instead.

I don’t have all the answers (who does?), but I want to share a few things that I’ve come to learn about MS. Just remember, you are not alone. Not now, not ever. I am here for you, and so are your closest friends and family.

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A Love Letter to My Younger Self

By: 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.

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You Got This!

Receiving a multiple sclerosis (MS) diagnosis can be overwhelming, but it’s also the beginning of a journey where you can take charge of your health and future. While MS comes with uncertainties, empowering yourself with knowledge and a proactive mindset can make a world of difference. Start by educating yourself about MS through the Multiple Sclerosis Association of America (MSAA). Understanding your diagnosis helps you make informed decisions about treatment, symptom management, and lifestyle changes.

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Trouble Swallowing Food or Drinks

Many symptoms of multiple sclerosis (MS) are challenging to endure. For example, having difficulty swallowing is a common issue with MS. It can prevent any pleasure or comfort when eating a meal. Many people with MS report being discouraged from eating at all due to the severe pain and terror it can cause.

We reached out to the MS community to learn more. We asked, “Do you ever feel like your food gets stuck in your throat or experience other difficulties when it comes to swallowing food or drinks?”

We received 280 responses to our prompt! The MS community was moved to share their symptoms.

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