Rejuvination

When shit happens, turn it into fertilizer.

-Kute Blakson

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From the beginning, this blog has always been about staying fit through chronic illness. Three years ago when I suddenly became totally disabled from a new disease called myalgic encephalomyelitis (M.E.), my world was turned upside down. One huge obstacle that differentiates this illness as unique is called exercise intolerance. It means that when I exercise, my disease is not just exacerbated but progresses to a new level of severity, which means my tolerance for exertion is that much lower, requiring even less energy to cause another crash and reduce my exertion threshold even further. This can create a downward spiral that is sometimes impossible to escape, leading people with M.E. to become essentially paralyzed in their beds, unable to even move their arm or have the energy to digest food. Many are fed through NG tubes and/or IV lines... Corpses that spend years in bed, unable to move or even tolerate touch from a loved one, alone in their agony and waiting for a cure. (Whitney Dafoe is one example.)

This was an incredibly difficult lesson for me to learn.  I even tried just walking for fifteen minutes a day, and that would steal all of my energy for the entire day and plummet me into a crash. I was physically broken…. which led me to be emotionally heartbroken as well. As my few loyal readers know, physical fitness has ALWAYS been a huge part of who I was. In addition to many other parts of myself I felt I had lost from this disease, it had also taken away my athleticism. I started to fear atrophy and deconditioning, something I don’t think I could live with.

I used to use charts like this to train, but this chart is no longer accurate for me since 
M.E. drastically changes our maximum and aerobic heart rate zones. Having just 
turned 39, I am now probably closer to the numbers for someone in their sixties.

But that soon became the least of my concerns. I didn’t even have enough energy to wash my hair or shave my legs. I would crash and be stuck in bed for a full week from cleaning the house or going to the grocery store. Even my super-gentle therapeutic yoga class designed for the chronically ill and elderly was far too much for me to endure. My heart races like I’m running a marathon just from standing and walking across the house. Suddenly fitness was no longer a priority compared to survival. As I write this even, it has been several days since I’ve showered.

My HR varies day to day
or minute to minute

However, my close friends, family, and loyal readers know how driven and passionate I am, especially when it comes to my goals. I am and always have been a “go-getter”. Six years ago in this very blog, I decided to do the impossible when in a somewhat similar situation.  I was on an immunosuppressive drug that actively turns muscle to jello and causes major weight gain and swelling. Doctors, online sources, and everyone who’s been on this drug for longer than a few weeks knows this to be true without a doubt. I decided after several rounds of this god-awful “therapy” that I was going to do the impossible. I was not going to let it get the best of me this time, and I fought against the effects of the drug. With sheer will and determination, I proved to myself and the world through severe calorie restriction and continued running and weight-lifting that I could not only prevent the weight gain and disintegration of my body but actually gain muscle tone.

Over the last three years since I’ve had this new chronic illness, it has been proven to me time and time again through not only personal experience but through clinical studies by the experts of this disease that exercise is not only hurtful to our bodily state, symptoms, and prognosis but also very dangerous for anyone with this disease. But I have learned a lot since writing this blog AND since becoming ill with myalgic encephalomyelitis. I have been absorbing knowledge like a sponge about what and how and why we cannot tolerate exercise. I’ve learned about pacing and how to prevent crashes. I’ve learned how to listen to the tiny, minute signals from by body telling me that I’ve had enough. Letting me know that one more move will cause a crash.

I’ve learned that if I keep my activity to under two minutes, I can be okay. I’ve learned that some yoga poses can actually drop my heart rate instead of increase it. I’ve learned that my body is much more tolerant with poses that keep me in a inclined or reclined position rather than standing upright. Armed with this information combined with my heart rate monitor and my previous expertise on diet, exercise, and fitness, I now believe that I can come up with a regimen that will allow me to again regain my muscle tone and become as fit as possible in my new position.  I will never be a runner again, and cardio exercise will always be dangerous for me.  But I learned a long time ago that the purpose of cardio is just to keep the heart in shape, and that weight gain or loss happens much more readily in the kitchen than the gym. So as long as I watch my diet (also affected by this disease; more on that in a later post), then gentle stretching combined with incredibly short segments of mild and carefully-monitored static internal core exercises (such as kegels), body-weight exercises (such as shallow squat), and yoga poses (such as bridge) that minimize movement and maximize important bio-mechanical muscle activity all just may be able to help me regain control of my fitness.

Today is the first day of this new journey. This new goal I have set for myself. I am yet again about to do the impossible. My personal nickname and online alias has been “bootstrap” for as long as I can remember, because I have been picking myself up by the bootstraps every day since childhood.

Well, here I go again. I am picking my broken body up by the bootstraps and tromping in a new, much more gentle and forgiving direction. No more beating my body into submission. This path is all about listening to the body and treating it as fragile and precious. You don’t know how valuable something is until you lose it. I have lost so much with this one single illness… including 80% of my previous functioning, both mental and physical. I am treasuring that last 20% as if my life depends on it, because it does.

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