“Wow, you don’t look like you have MS!”
I’ve certainly had my share of that comment over the past 10 years of battling this disease. In the past, my usual reply was, “thanks.” But recently, I’ve decided to put my foot down on being politically correct, and these days, when I get that comment, my response is more like, “So tell me, what should someone with MS look like?!”
What MS Looks Like
Yes, many of us with multiple sclerosis (MS) have to use wheelchairs, walkers, or canes and are noticeably struggling with walking and other physical tasks. But there are also many of us who do not (yet) need an assistive device to get around.
MS is not a one-size-fits-all disease. Those of us who have it have progressions and relapses, with victories and defeats along the way. Some people who have needed to use a wheelchair at one point may at some stage have the good fortune of regaining their ability to maneuver without one.
MS is an unpredictable and often misleading condition, especially in its appearance.
I May Not Look the Part, But I Feel It
As a bodybuilder, fitness advocate, and person who has chosen to battle MS in the gym, I may not look the part of a person with MS, but I certainly feel it. And it is hard to keep hearing how good I look when inside, I am struggling like everyone else with MS to even get out of bed many mornings.
I am not complaining, because that is not how I handle my MS, but I do want to set the record straight on how I live with and overcome MS each day. The myth that I am somehow immune to the symptoms of MS, or that I really don’t suffer from the debilitating effects of the disease because I am able to train as a bodybuilder in the gym, is a far cry from the truth.
MS has not spared me any of the symptoms. I am constantly fatigued and have been for the 10 years since I was diagnosed. As I put it, I wake up, go to the gym, work, go to bed, and sleep, tired!
That is just how it is. Bodybuilding, eating a healthy diet, and doing all I do in the world of wellness does not eradicate the MS fatigue. Sure, it may make it less severe than it otherwise would be, but MS fatigue is still a part of every day for me. And MS fatigue is not just mainstream tiredness: It’s a never-ending exhaustion that makes you feel like you’ve just run 20 miles.
Pursuing My Goals Anyway
In spite of this, my philosophy is that if I’m going to feel tired no matter what I do, I may as well do what it takes to get myself in shape while feeling tired.
When people see me doing squats or leg presses, they assume my legs work fine. Let’s clear that one up right now: I have not felt anything on my left side, from my fingers to my foot, since 2006!
Sometimes when my wife, Kendra, and I are out to dinner with people who don’t know me, she’ll stick me with a fork in my left arm just to make the point. When she does, I don’t even flinch.
I am numb, tingly, and very uncoordinated due to this lack of feeling on my left side. I drag my left leg and often trip when going up stairs or even walking on a flat surface. It’s like having a log for a leg.
So how do I get underneath 300+ pounds and squat, or push 800+ pounds in a leg press, you ask? With great difficulty! I position myself within these pieces of workout equipment and use the strength I have developed over the years along with a tremendous will, and I do it.
But I tremble and shake afterward. Because I do not have normal sensation in my left arm and hand, it is almost impossible for me to squeeze anything. Yet I strap my hands onto the heaviest weights I can and I lift. And when I’m done lifting, I feel the pain.
MS: Motivation to Succeed, Not an Excuse to Fail
I have made the choice in my journey with MS to not let it define me or my goals, no matter what I have to endure. I have learned with much pain and many setbacks that no matter what cards MS deals me, I will not give up my passion for the gym or stop calling myself a bodybuilder.
Just the other day, my MS symptoms were so troublesome that I had to hold onto anything I could as I went from machine to machine in the gym to keep from falling over. Watching me get out of each machine after I had finished my sets was like watching a drunk in a bar trying to get out of his seat. I must have fallen back two or three times at every station.
It was not a pretty sight, but it’s one I am willing to deal with when MS tells me it wants to get the best of me.
I am not suggesting that my way is the right way for everyone to conquer MS. But I am encouraging everyone with MS to find what they love, set goals, and let MS be their motivation to succeed, not their excuse to fail or to do nothing.
About That Aisle Seat…
If you’re wondering whether my vision is clear or my bladder works like a “normal” person’s, rest assured, I have the same optic neuritis and feeling I have to pee all the time as many others with MS.
I no longer drive on the freeways of Southern California, because I may just hit a car that is blocked from sight by the black hole I see through my left eye. When flying on a plane, which I often do, I sit in an aisle seat and as close to a bathroom as I can, so that when I think I have to go, I can get there quickly. Of course, most of the time, I stand there at the toilet hoping to get it over with the first time around.
News flash! I am not symptom free because I look like I am. I am not Superman because I do what I do. And I certainly am not any stronger, wiser, or better than anyone else with MS because I’ve elected to be an MS poster child for fitness.
I am a MSer who suffers every day with the same weird vibrations, numbness, pain, fatigue, and symptoms we all face. So if anyone makes the mistake of saying you don’t look like you have MS, I invite you to do what I plan on doing, and that’s to hand the person a neatly typed list of my symptoms.
Photo provided by David Lyons.
David Lyons’s new book, Everyday Health and Fitness with Multiple Sclerosis, is due to be published on January 1, 2017, and can be preordered now.