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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Fall — Season of Revival? 

By Doug Ankerman

Step outside and you’ll notice the change.  Temperatures beginning to dip.  Breezes blowing a tad harder.  Trees morphing from green to an artist’s palate of reds & yellows. 

My once vibrant flowers now pots of muddled blandness.  Fall sucks the life out of everything once bright and lively.  A looming forecast of what’s to come. 

Fall is gnarly…Err wait, what?  No, no fall is good!   

Fall is when I, as an MSer, come back to life! 

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No Time Like The Present

By Lauren Kovacs

Just do it.  I am full of cliches.  I admit I lean to the dork side at times.

Time is of the essence.  So grab your life by the horns and go.  Time management is a key to MS.  Sew it into the core fabric of your life.  Nourish it like a sensitive plant. No last minute Lucy here.

Build in extra time.   I hate rushing.  Now is not the time.  Be the turtle. Take your time and don’t rush.  I drop more stuff, if I rush.  If I wait for an intention tremors to pass, I can do it.  Find your own rhythm. 

For example, I often get up two to three hours before mass (church).  Makeup, hair, clothes, medicine and breakfast. My “Barbie arm” and a leg often are stiff. I never know how easy or hard dressing for church Might be.  “Get errr done” as they say.

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Little Things

By Doug Ankerman

Time management?  When one has multiple sclerosis?

Good one!

That’s like asking if you would rather walk on broken glass…or hot coals?

You see, I HAVE the time.  I no longer work and my obligations are few, so time is no prob-lemmo.  Management, on the other hand, well that’s where MS fudges things up. 

Because despite all my pre-planning, organization and visual run-throughs, I am always behind.  Or so it seems.

Always longest in the shower.  Pokiest to get dressed.  Last to the car.

Trying my darndest, MS is the speedbump I struggle stepping over.

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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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Feet Up

By Doug Ankerman

Kick back. Tune out. Unplug. Turn off. Relaxing is as simple as that, right?

Maybe. But it helps.

Today’s totable technology makes it difficult to “get away from it all.” Laptops, cellphones, Bluetooth, iPods, WiFi…the list is longer than your power cord.

There is no escaping the news, the noise or pictures of what Sharon ordered at that Italian joint.

With MS my brain & body are frazzled enough. The buzz of mindless clutter only adds to a defragged nervous system.

As a self-proclaimed news junkie, it’s even harder for me to step away from the gear to find my blissful “chi.” But it can be done. And it may be easier than you think.

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