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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Burdens Shared

By 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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Fortifying Relationships

By Stacie Prada

Some bonds can withstand extreme stress and grumpy behavior. Others falter with the slightest misstep or misunderstanding.

Sometimes I wonder where I stand with people I haven’t seen in a while. After getting divorced, I worried I was portrayed in a way that led people to judge me in a way I thought was unfair and inaccurate. When encountering people I haven’t seen in a while, I’m not always sure if their opinion of me has changed.  I cherish those who light up when they see me. My fears and insecurities vanish immediately, my entire body relaxes, and I delight in the reunion.

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New Year’s Reflection

By Stacie Prada

One thing to remember about New Year’s resolutions: They are not required.  If you don’t want to make any, don’t.  I like them for the feeling of a fresh start and hope for a better future, but I also know that I need to be ready before I make a change. If I try before I’m ready, it will end with feelings of failure and guilt.

Coming out of the holiday season, I recognize I did a lot, and I don’t feel like I took enough time to rest and recharge. Now it’s January, there are many things to do, and I’m not feeling completely ready. I’ve been too busy getting things done each day to take a step back and look longer term.

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Wishes for Wellness

By Stacie Prada

Bright lights on buildings and cool decorations

Brighten the landscape and cause a sensation

Snail mail and email share tidings and cheer

Wishes for wellness and Happy New Year

Kindness from strangers and heartfelt connection

Show us what matters and trigger reflection

Posts on the social show who they hold dear

Wishes for wellness and Happy New Year

Visit with loved ones and arrive gift bearing

delight in giving while sharing and caring

Joy, peace, and goodwill for those far and near

Wishes for wellness and Happy New Year

When fatigue hits

When the stress rears

When I’m overwhelmed

Focus on what matters, let go of the rest,

and deem the season success!

This was written for fun to be sung to the tune of “My Favorite Things,” by Oscar Hammerstein II and Richard Rodgers in their musical, “The Sound of Music.” Take good care all!

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and celebrate this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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Moments Matter

By Stacie Prada

Have you ever been in a mood and had something happen that changed it in a moment? It happens a lot, and some moments stick through the years.

I recall being at work years ago, and cheerfully saying, “Good morning!” They responded quickly and sharply, “What’s good about it?”

I don’t remember how I responded then, but I still think about how it startled me. I felt like I’d done something wrong, and I wasn’t sure what. My mood swiftly dropped from happy to resentful.  This memory helped me learn the life lesson that we’re all living different experiences, and lots of interactions have nothing to do with us.

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Look Forward to Something

By Stacie Prada

Fall where I live means shorter days, less sunlight, more rain, and colder weather. I realized after my Multiple sclerosis diagnosis, that seasonal shifts to spring and fall are times when I’m more susceptible to MS exacerbations. I used to worry about it, and it’s taken a lot of effort to feel more confident approaching seasonal changes.

My usual approach is:

  1. When things are tough, take inventory of what’s tough, what will help, and what’s helped before; and
  2. Look forward to something.
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DIY Self-Care

By Stacie Prada

Self-care: Anything that nourishes me physically or emotionally, reduces stress, or improves my well-being.

Self-care is necessary and often neglected. That said, it only feels neglected when we’re feeling stressed, overloaded, or having a hard time. It’s important to give ourselves credit for all we do to care for ourselves and others every day.  Perspective matters. If we remember how much we’re already doing, it’s easier to show compassion for ourselves.

Self-care by definition means taking an active role in taking care of ourselves, physically and emotionally. It implies it’s solely a Do It Yourself (DIY) responsibility. When feeling overwhelmed or not well, it’s natural to believe the answer is to just try harder. This is when we need to remember we’re like a DIY home project: we can’t and don’t need to do it all on our own.

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Keep Moving

By: Stacie Prada

If you can’t run, then walk, if you can’t walk then crawl, stretch, or flex. Just keep moving.

Living an active lifestyle can be a challenge in the best of circumstances. Add living with multiple sclerosis symptoms such as fatigue, foot drop, and heat sensitivity, and it’s generally frustrating and takes more effort to stay motivated. Factor in adverse weather conditions, and it’s a huge undertaking to override the urge to be sedentary.

With MS, it’s common for symptoms to act up when the body temperature increases. That’s why hot weather is one of the many obstacles to staying active. When I was still learning how MS affected my body, it was scary when a jog led to body numbness from the neck down and an inability to control my feet reliably. Over time, I learned to differentiate between heat and exertion-induced pseudo-exacerbations that would subside within an hour or so after I cooled down and disease-progressing exacerbations that last much longer.

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Seeking Hope

By: Stacie Prada

Finding my new normal was my initial goal when I was diagnosed with multiple sclerosis. I didn’t know what I’d need to know to live well with MS, but I held faith that I would learn what I could when I was ready. My hope was to live as well as possible with MS. Both faith and hope are deeply reliant on me to do what I can. 

The fact is I’ve had periods of holding it together, phases hoping to come out of a lot of MS symptoms, and moments where I feel like I’m rocking this life and doing fabulously.

Early in my diagnosis, I sought out every resource I could find. I read all the books related to MS in the local library, I joined the local MS Self-Help group, and I followed my neurologist’s advice. I monitored my symptoms and tried to make sense of a confusing and inconsistent illness. I searched the internet to learn all I could about MS and what helps. My health was a project to solve, and I treated it like a second full-time job. The urgency to figure out what could help was stressful, but I think it was a necessary phase of adjusting to life with a chronic illness. All of these efforts helped me become more hopeful.

Scientific studies conclude those of us living with chronic illness have a better quality of life when we have hope. When we’re optimistic, we believe our efforts can make a difference. Having hope helps combat stress and anxiety.

When lacking hope or feeling pessimistic, we’re less likely to think our efforts matter. Either way, what we believe matters for our mental and physical health when dealing with adversity.  

We can’t fully control or count on a constant level of hope. Accepting our highs and lows as normal can help ease some of the stress of living with MS. Monitoring our mood and stress level can help us notice when we’re feeling less hopeful. What we need in those times differs for each of us, and they vary depending on what’s challenging us at that moment.

What do I need, and what might help? Sometimes I need to research the symptoms that are challenging me, and others I need to talk to someone who will listen. Some moments benefit from taking a breath, stretching, and looking inward. Other moments are best served by looking outward and thinking about something other than myself. Each moment’s feeling is unique, and each needs its own plan of action. My not-so-new normal is only consistent for seeking hope and accepting the path is always changing.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and enjoy in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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