Summer Heat and Changing Goals

By Stacie Prada

Each day, week, weekend, season, and year, I like to think about what my goals are. What will I want to accomplish?  When it’s over, will I have a sense of fulfillment for the choices I made and how I spent time?

Each season or time of year has a different set of inherent challenges that aging and multiple sclerosis make more challenging. Spring and autumn consistently trigger fatigue and body malfunctioning for me. I blame the weather changes and obligation surges.

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Intentional Motivation

By Stacie Prada

It’s hard to stay motivated to do everything I think I should do to be healthy and live well with Multiple Sclerosis.  It seems like the hope of living with fewer MS symptoms and potentially less disease progression should be enough motivation, but temptation, fatigue, and a bit of resentment that I even have to deal with MS demotivate me.

Demotivation can also come from unlikely sources.  A few years ago, I saw a physical therapist for hip pain. I described the fitness routines that I’d done for years. It included a daily minimum stretching and activity quota, and I was proud of myself for always doing it.  I was very flexible and fairly strong. My habits supported my fitness level.

Accurately, the physical therapist told me I had plateaued with my exercises. I needed more strength training to address the hip pain and improve my fitness level.  I did the prescribed exercises until the pain subsided, but it was tough doing everything they suggested. I was discouraged that I wasn’t doing it all. Not only did I stop doing the prescribed exercises, but I also stopped doing my minimum daily fitness regimen. 

I took good information, and I mentally warped it into nonsense.  Because my previous minimum daily routines weren’t enough, I concluded they weren’t worth doing. I justified that I was still active and exercising, I just wasn’t doing it daily. 

Put in writing, it’s obviously flawed and unhelpful logic. In my mind, it made sense.  In reality, I squandered good habits that were helping me.  After a few years without daily stretching, my flexibility and strength diminished. Things that used to be easy are painful. I recently reintroduced my daily minimum regimen as mandatory, and I’m seeing improvement. My flexibility and strength are increasing, and my movements are less painful. 

Reflecting on this experience inspires me to be more intentional about what motivates me and what discourages me. 

The motivation that comes from excitement works better than fear.  I have more success working toward goals than trying to avoid potential consequences. I want to feel like I’m being rewarded, not punished.

My resentful and fearful thought process is that I have to exercise so that I maintain my mobility as best as possible because I have a sucky disease that mostly targets my spine and affects my legs and arms. If I don’t keep moving, I won’t be able to keep moving.

My enthusiastic thought process is that I get to exercise and live in a body that can do things I enjoy. The better I treat my body, the better I’ll feel, the more I’ll be able to do, and the better odds I’ll have aging with MS. If I keep moving, I’m more likely to be able to keep moving.

Both approaches are true, and both work. When my resentful mindset kicks in, I hope to notice it and not give up.  I want to remember how much my body has done for me and continues to do for me and set a goal that excites me.  It doesn’t have to be a big goal, it just needs to be meaningful and encouraging. When motivation comes from an enthusiastic mindset,

I’m eager to do what’s good for me, and I’m happier overall. It’s a win-win!

*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 rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

Multiple Sclerosis Generations: From Diagnose & Adios to DMT to Crowdsource

By: Stacie Prada

Generations offer connection with those before us, with us and after us.

When age groups are categorized by generations, it’s interesting to see how birth year and world events influence life circumstances and outlooks. In the United States of America, the generally accepted generations include the Lost Generation, the Greatest Generation, the Silent Generation, the Baby Boomer Generation, Generation X, Millennials, Generation Z and Gen Alpha.  It occurred to me that people with Multiple Sclerosis could also be considered as living in other various generations depending on how old we were at first symptoms and diagnosis, the year we were diagnosed, and the understanding of MS and available treatments during early adulthood. 

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Cultivating Kinship on Social Media

By: Stacie Prada

An estimated 2.8 million people worldwide are living with Multiple Sclerosis, and some choose to use social media.  They share their experiences, and they allow us to see their vulnerability for the betterment of all. Social media can be cold and hurtful, yet it can bring us community and kinship. It’s an individual decision to participate or avoid it.  It’s scary and risky to put ourselves out there, and we need to support those who are willing to share. 

I’m grateful for individuals living and speaking their truth.  Some have been sharing for decades, and some are just starting. I’m heartened by commenters who support with compassion and scroll past when things don’t speak to them.  I’m inspired by so many who cheerlead and model respectful interactions with exceedingly tough topics. I hope we can hang on to the benefits of social media and lose the hurt it can cause.  We need to protect our vulnerable peers, and I hope we can do this with compassion.  We are better for the myriad of voices and experiences. Suffering alone is misery.  Knowing we aren’t alone helps us get through the tough stuff.

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Tracking Symptoms and Treatments with Compassion and Encouragement

By Stacie Prada 

With each new year, I think about what’s ahead, what I can control, and what will make the next 12 months fulfilling for me.  Instead of pushing myself to do more or be better, my approach this year for health management is to track what helps me manage my health with methods that are easy to use and visually informative.  

Knowing what my body needs is an ever-changing puzzle, and tracking provides clues for what could be the cause or remedy for things contributing to health challenges. Add aging and menopause to living with Multiple Sclerosis, and knowing how to best manage my changing body is not easy.  

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A Season of Convergence 

By Stacie Prada

The holiday season for me is one of convergence. A convergence of work demands, holiday tasks, gatherings, gifts and merriment. It feels like everything needs to get done, and there’s not enough time in the day or energy in my body to do everything. It affects my routines, eating habits, cash flow and health. Yet I love it and look forward to it every year.

Decorations brighten the landscape, workplaces and homes. Stress abounds, but so does good cheer. Frenzy and serenity coexist.

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Thoughts Too Big to Share: An Early Fatigue Symptom

By Stacie Prada

When Multiple Sclerosis fatigue rears up, my first noticeable sign is when I stop telling stories that come to mind. I edit myself more, and I contribute to conversations less. A decision point noticeably inserts itself into the thought process.

Do I have the energy to share this story? Am I able and willing to commit to staying in the conversation? When I’m experiencing fatigue, the answer is no. Things I find funny, interesting or relevant become thoughts too big to share.

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Seasonal Well-Being Checklists

By Stacie Prada 

For me, autumn elicits memories of a new school year, football games, raking leaves, carving pumpkins, and pressing apples for cider. Prepare for winter with home tasks and wardrobe shifts. Move sweaters, boots and winter wear from boxes or the back of the closet to the front for easier access. Suggestions for weatherizing homes and belongings are prevalent and specific, but they are less so for personal health and well-being.   

Often, I experience recurring and seasonal symptoms before I realize I have a method that helps me cope.  I’d love to be able to avoid the suffering it causes if at all possible. I decided to create and follow a seasonal list of tasks to proactively address my health needs. It has an emphasis on issues that Multiple Sclerosis challenges or creates for me each year.  

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Goal Management Instead of Time Management

By Stacie Prada

Time is fixed and passes at its own pace.  Goals can grow, contract, adjust and evolve.

Often advice for time management includes instructions to make lists, dedicate time for tasks, be organized, get up early, multitask, do more, and just generally be different than you’ve been.  While some are good suggestions, the attempt to fit an individual’s unique experience into a fixed and uncontrollable passage of time can miss the mark. It can be overwhelming and unrealistic when not considering a person’s specific life circumstances, obligations and health.  When already feeling like there isn’t enough time, the advice to do more can feel offensive. 

Time management seems to inherently approach the future from a perspective of scarcity.  It is true there is only so much time in the day, the week, the year, and a lifetime.  Each moment passes whether we’ve spent it intentionally or not.  Even so, I’d rather approach the future with a feeling of abundance.  There is limited time, I have limited energy and abilities, and I also have the opportunity to fill that time in ways that fulfill my needs and goals. I can do this by being clear about my immediate and long-term needs as well as my goals in each moment and for my life.

Time management advice recognizes that it can be a project to fit everything in, but it often forgets it can be effort to fill the time.  I’ve had both in my life, and at times they’ve paradoxically co-existed. There were fast-paced workdays where dedicated, productive accomplishments never seemed to put a dent in the backlog, and there were evenings with long stretches of solitude where loneliness was at the ready to dominate my head space. The daily schedule of surge and stagnation with such severe contrast was exhausting. That experience is telling for how different needs and goals dictate different choices and solutions.

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I Wish My Body Had a Dimmer Switch to Relax…

By Stacie Prada

It’s too bad our neurological wiring doesn’t include on/off dimmer switches like some of the electrical lights in my home. The central nervous system and myelin degradation caused by multiple sclerosis are often compared to electrical wires with the outer coating frayed or damaged. It seems only fitting that we should be able to extend the metaphor and enjoy the ability to increase or decrease the current through our nerves. The fantasy of being able to turn off or dim misfiring electrical signals to my arms and legs when spasticity is acting up is enticing.

Dimmer Switch written on a blue post-it talking about how to relax
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