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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Navigating Life with MS without My Mother

By: Stacie Prada

This is my truth. If my mom hadn’t died when she did, she would have been a comfort and helper when I was diagnosed with multiple sclerosis and felt so alone. She would have made a difference in millions of ways, but I’ll focus here on how being motherless relates to my MS. 

I was diagnosed 15 years after my mom died.  In hindsight, I’m certain that following her death I had an MS exacerbation characterized by extreme fatigue, depression, and surprising clumsiness. At the age of 23, I was executrix for her estate. It was a monumental responsibility organizing her funeral, managing her finances and legal affairs, selling her home, and dealing with everything a life suddenly cut short entails. 

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Including Stillness as a Fitness Goal

By: Stacie Prada

April is National Stress Awareness Month, and it’s a perfect reminder for me to check in with my stress level.  It’s an extra busy month for me each year meeting professional and personal commitments while accommodating my health needs.

I recently did a 15-minute High-Intensity Interval Training (HIIT) workout, and I followed it with a guided meditation of the same duration.  When I found myself needing more willpower to stay engaged during the meditation portion than I needed during the high-exertion portion, it occurred to me I really needed to work on calming my mind more. 

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Stress & MS

By: Brittany Quiroz, “A Hot MS”

I have sort of programmed myself to have a respect for the natural order of things in life. I’m one of the believers that everything happens for a reason. We are given life, and we do our best to milk every second out of it. Obstacles are inevitable. It’s a natural part of the cycle of our time here on earth. I can’t help but think that my difficult walk-through life with obstacles far from the norm contributed to my diagnosis with multiple sclerosis. 

There’s so much scientific backing to show how when our body goes into a fight or flight response, that it has a substantial effect on our nervous system. When we continue to put our bodies into that sort of space, eventually it can take a medical toll on our bodies. 

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What My MS Diagnosis Taught Me

By: Stacie Prada

My multiple sclerosis diagnosis was sudden and unexpected. Unlike others who undergo years of testing, monitoring, and uncertainty, my diagnosis occurred within two months after a major MS exacerbation. While it was a turbulent and scary experience, at least it was relatively quick.

Because my diagnosis was swift and not anticipated, I learned serious illness can be invisible. Being healthy and having a chronic illness can both be true in the same body. Things are not what they appear. Ultimately, I learned my normal wasn’t normal.

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MS & Acceptance

By: Brittany Quiroz, “A Hot MS”

How do we really come to terms with accepting our new reality with an incurable progressive disability? Right off the bat we probably feel like we have been predisposed to failure. Self-acceptance requires us to really be comfortable with our present situation and let’s face it, there are plenty of parts about living with Multiple Sclerosis that are not considered “comfortable”. MS can present an abundance of changes and unexpected whiplash that we do our best to navigate through. 

The key to sustainable self-acceptance relies on our ability to stay present while not setting unrealistic expectations for ourselves. We can be really good at beating ourselves up, can’t we? It doesn’t help that we live in an era where competition is all around us. Our status in society can easily be determined based on how many likes we get. How many followers we have. What car we drive. What our zip code is. What job we have. It’s easy to feel we’re in constant competition with the world. 

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Infused

By Chernise Joseph

I wanted to do some corny joke like, ‘Yep, that’s me! I bet you’re wondering how I got here,” for the photo from my infusion on Friday, but it seemed a little too double-edged… badumtiss. No? That’s alright, infusion jokes are never funny unless they’re mixed up juuuust right. Ha, okay, in all seriousness – my multiple sclerosis said hello to me on Friday. Well, I suppose it always says hello, but it likes to do it in unique ways sometimes like in the form of an 8-hour infusion. Whew! You read that right. Eight hours of beeping, vitals, tubing, fluorescent lights, too-cold rooms…

I used to hate infusion days. They were long, yes, but they were mostly scary to me. I didn’t know what to expect, nor did I really understand just how important what I was doing was. Of course, I had done as much research as a 23-year-old with a humanities degree could do, but my brain still felt frazzled. What if I spontaneously combust? What if I grow an extra head? What if I’m patient zero for the zombie apocalypse? It was all I could think of going up to the infusion, during it, and even after for a while.

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