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The Unique Way I Wish People Could Understand the Fatigue I Feel From Multiple Sclerosis

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Growing up in the ’80s, family trips to the local shopping mall usually included my brothers and I playing video games in the arcade until our parents finished their mom-and-dad stuff and it was time to go.

My time and quarters were spent playing mostly sports-themed games, but when I ran out of change, I’d often wander over to watch others play Gauntlet.

This adventure game was very different from Tecmo Bowl and the other sports games I usually gravitated towards. Rather than trying to beat another team by scoring more points, it was about pure survival.

I didn’t fully understand Gauntlet or the larger objective of playing it, nor did I really care. My eyes were more drawn to each player’s score — highlighted in big red numbers and usually in rapid descent — as they struggled to complete the various levels.

There was one memorable phrase I remember from the game that sticks with me even today: “Your life force is running out!” It was uttered by the game’s narrator whenever a player’s health had decreased to a threatening level.

For those with multiple sclerosis, energy is a prized resource and only available in limited quantities. Read any medical definition of multiple sclerosis and fatigue will be listed as one of the more common symptoms.

Personally, I find the term “fatigue” lacking in accuracy and descriptive affect for those living with MS.

Webster’s defines fatigue as “weariness or exhaustion from labor, exertion or stress,” but with MS, no exertion is required to enter a state of exhaustion; rather, weariness is constant.

For me, normal and daily routines like showering and shaving are obstacles to be planned for and managed, all in the name of preserving my energy. Yes, even just taking a shower!

One moment I’m reading a story to my children or enjoying a dinner with my wife then suddenly, my energy has vanished, my bones feel cold and achy, my mind is hazy and I’m unable to think clearly.

I worry my children think I’m ignoring them, friends and family wrongly sense I’m disinterested or new acquaintances wonder why I seem so tired and unengaged.

But what if I had my own colored indicator, floating above my head and clearly identifying my energy level?

Hearkening back to memories of “Gauntlet,” my “life force” would blink in big numbers, and a friendly alarm would go off when a low level was reached, alerting myself and others my energy was running out.

In this new world, those of us with MS could use this tool to help educate ourselves and others on the moment-by-moment challenges we face against our own bodies.

Understandably, some might hesitate to broadcast their personal battle — a scarlet MS for all to see. But it would also be a portal for seeing through the MS looking glass, easing confusion and misunderstanding while highlighting our strength in battle

Follow this journey on A Life Less Traveled.

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Originally published: June 27, 2016
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