Not Letting MS Win.

Adam and I have been very committed to fitness over the last year. We’ve changed many of our eating habits for the better, learning how to live without wheat and adding many more veggies to our diet. We also managed, most weeks, to get to the gym 3 times. This year, we’re going for 4 times a week. While I haven’t seen much in the way of weight loss, my body has reshaped, so that’s a step in the right direction. I know I’m building muscle. I tell you all this not to brag, but because it’s relevant.

So Ridiculously Counterintuitive…

Monday and Tuesday of this week, I was dealing with some pretty intense MS fatigue. The idea of going to the gym was ludicrous to me. (Hey, I’m having a hard time walking to the bathroom fast enough. I know! Let’s lift weights!)

Now, you have to understand, MS fatigue is utterly and completely different from being tired. You can be in a great mood, be motivated to do things, and quite literally not be able to make your body move without extreme effort.  You can be extremely sleepy and not able to actually sleep. Sometimes, it’s like wearing a lead apron over your whole body. At other times, it feels an awful lot like turning into a weak puddle of goo.

This graphic perfectly represents what MS fatigue does to you.

This is what MS fatigue does to you.

“The exact mechanism of MS fatigue is not known, but studies suggest that changes in the brain caused by MS may require MS patients to use five times more effort to complete a simple task than a person without MS,” says Julie Stachowiak, PhD, author of The Multiple Sclerosis Manifesto: Action To Take, Principles To Live By.

Never being one to take things lying down (literally!), I had to research ways to combat fatigue.

The most consistent suggestions on the internet were pharmaceuticals (like ProVigil) that I can’t take thanks to hypertension, simplifying your life (which doesn’t help when you’re already in the throes of the beast), treating depression if you have it (check!), and exercise.

That’s right — exercise.  When it’s hard to move… move more. It sounded bassackwards to me. I was actually angry thinking about it.

But it works!

According to the National Center on Physical Activity and Disability (NCPAD), “A study conducted by researchers at the University of Utah demonstrated the benefits of exercise for people with MS. Those patients who participated in an aerobic exercise program had better cardiovascular fitness, better bladder and bowel function, less fatigue and depression, a more positive attitude and increased participation in social activities.”

More recently, a 2013 study conducted by scientists at the Division of Physiotherapy and Rehabilitation at Istanbul University demonstrated that supervised group exercise training is effective in improving balance, functional status, spasticity, fatigue and quality of life in moderately affected people with multiple sclerosis, with no worsening of their clinical status.

So, despite my goo-like status late Tuesday, I cowgirled up and went to the gym. Mind over grey matter. I was honestly shocked by the immediate results.

Sure, I went slower on the stationary bike than I usually do (It was so tough!), but after about 20 minutes of entirely willpower-driven strenuous activity, I was no longer desperately wishing for sleep or even wanting to quit. I felt the heavy, pressing feeling lift. I suddenly had energy like it was a normal day. I was even able to finish up my 30 minutes on the bike and do a 15 minute cool-down on the treadmill. Like a boss.

Exercising = Having Energy

I have a theory about MS fatigue and when it hits me hard.

Last week, we went to the gym 4 times (M,T,Th, &F), and then we took the weekend off. After 2 full days without any exercise, I had some of the heaviest fatigue I’ve experienced… so I took Monday off too, thinking that my body needed the rest. (Wrong.)  Tuesday morning, I was certain I’d been run over by a steam roller in my sleep… but Tuesday night, I hit the gym. Today, after working out regardless of fatigue, I feel significantly better than I did the last 2 days.  If not for the tingling paresthesia in my back, I’d actually feel normal. Then again, I’m so used to the tinglies on my back that maybe this is “normal” for me.

Anyway, my theory is that my body now requires that I work out almost every day for it to function properly. When I take more than 1 day off from exercise, I experience fatigue. And fatigue sucks so much. It’s like gravity is trying to crush both your body and your spirit. Last night, I actually had the thought that cycling was like mining for energy… that cardio, for me, is like plugging myself into a charger. I honestly think that daily cardio exercise is going to be the only way to keep fatigue at bay.

If it really is this simple, maybe this crazy broad wasn’t as insane as I thought she was.

Neither of us is going to let MS win.

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