Tuesday, August 31, 2010

Exercising Discipline

I absolutely hated gym class in Junior High. I was a skinny kid growing faster than my Mom could sew, and I had no arm muscles whatsoever. So when the dreaded "physical exam" days came around, I usually got physically sick. Trust me, vomiting cereal before you have to do pull-ups does not help your score. But it didn't matter. Because I could not even do one pull-up, even on a good day, with my belly full of Captain Crunch. When the diameter of your arms is smaller than that of the pull-up bar itself, the bar will win every time. 

What made it such a trauma for me was that you had to do these supposed "feats of strength" in front of both the gym teacher, and your classmates. And here was the rub: You had, as the teacher would always announce in that bellowing voice, "a full 60 seconds to do as many pull-ups as you possibly can!" 

Well, when you can't do even one pull-up, having sixty full seconds isn't an advantage, it is just out and out child abuse. I mean, how long does it take me to do zero pull-ups? I'll tell you straight out- about zero seconds. But yet there I was, hanging by my skinny saplings called arms, humiliated, with all my friends snickering for what seemed like an eternity. And my masochistic gym teacher with his stopwatch and mocking attitude actually making me hang there for a full sixty seconds, shouting "come on, you can at least do one!" Mercifully, I finally heard him click that stopwatch, and say robotically, "Exercise complete." 

It's funny how the very same words can be either cruel or motivating, depending on the delivery. For years, that memory, and the teacher's shout, haunted me like a bad dream. Until of course, I got to college, started eating Freshman portions, and allowed my fraternity brothers to teach me about weight lifting and exercise.  The very first time I had an upperclassman show me the benchpress, he was spotting me, and that weight came down on my chest like an anvil. But with true belief in his voice, plus a little testosterone, he said, "Come on, you can do it! Do just one! All it takes is a start!"  And to my surprise, I actually pushed that 135 pounds off my chest, and back into the rack. His belief in me, and seeing other guys benefiting from exercise, was all I needed. My commitment to exercise began that day in college as a 17 year old freshman.  In one semester I went from being a gangly 6 feet, 140 pounds, to a muscular 6'1 190 pounds. 

From that day on, sports, fitness and exercise were part of me for a full 15 years, until I got sick.  But M.E. as you know, of course changed everything.

For the past many years, and more dramatically in the months leading up to my starting Ampligen, I have watched my energy, and my ability to exercise, diminish. It got so bad, that when I arrived in this city to begin the Ampligen protocol, I couldn't walk from the airplane gate to the baggage claim. I was no longer 190 pounds. I had no muscularity left. I was barely 167 pounds of weakness with skinny arms. You could have given me a full sixty seconds, and I still could not have done one pull-up. 

But that's all changed now. Today, seven months after arriving here and being almost completely bed-bound, I am exercising again! It started slowly, but for the past full month, I've been going to the gym now almost every morning. I give the credit to Ampligen, and the amazing new things it has done to my body. But I also approached exercise this time in a new way as well. I guess some would call it a "holistic" approach, in that I decided to exercise more than just my body, but my soul and spirit as well. 

It only makes sense. My doctor has told me for years that too much "mental" work is just as bad for me as lifting too many weights. I can crash after walking too much just as easily as typing too much. Psychologists and theologians alike teach us that our soul, which is comprised of our intellect, our will and our emotions, can affect our bodies, and vice versa. 

So here's how I've been exercising all three:

My BodyDr. Irma Rey, Assistant Professor of Medicine and Sport Team Physician at the University of Miami, now working with Dr. Nancy Klimas says we should take a "low and slow" approach to exercise. Her research shows that especially for M.E. patients, we need to do exercises that are low in intensity, and slow in progress, so we don't crash. Because we have post exertional malaise working against us, because we build up lactic acid faster than "normal" people, we cannot exercise to exhaustion, or we will crash and burn big time the next day.

So Dr. Rey recommends a workout similar to what I've been using. Stretching, light short low weight lifting sets with long rest periods in between. If I do 1 minute of exercise, I wait a good 5 minutes to do the next one. And never do too much in one day. Dr. Rey recommends doing 2 short workouts a day, to restore energy.

This is what Dr. Darrel Ho Yen recommends in his brilliant concept of our thinking of energy as money. He says "Don't spend it all at one time, in one place." I've applied this concept to my exercise routine, and make sure if I spend an hour at the gym, fully 30 minutes or more of that is resting in between sets. But I also plan my entire day ahead of time, and count the walks I'll take, the time I'll be vertical in the grocery store, etc.And  I don't want to "spend" energy on stupid things, like being in a long line at the bank. I'll do my banking online, thank you!   Dr. Rey also recommends doing stretches in the pool, because the cool water can help blood pressure, and allow us to stand longer than our Orthostatic intolerance would normally allow us to do without the buoyancy of the water. The point is, even if your are stuck in bed- do something. Do stretches. Even if it's just one minute, her research shows that the benefits of stretching and releasing endorphins (which she says are more powerful pain relievers and mood elevators than opiates) are worth it.

My Soul- Exercising my mind, my will and emotions also takes planning, and for me, some sort of disciplined approach. So I make sure I plan my exercise routine for my soul each week as well. This includes playing some online mental stimulators like Texas Hold-em or Sudoku, trying to play the piano a little, participating in some online forums, and of course, listening to music.

My neurotherapist Kim Phillips told me for the sake of my sleep time, I should not do these things at night, because they stimulate my brain too much, and can keep me falling into REM. She also told me that sexual intercourse and orgasms release good chemicals. The other thing that exercises my soul pretty well is a good comedy movie. As they say, laughter is good medicine. The one thing I recommend you not do is watch too much talking head TV, like Olberman, O'Reilly, Beck, Maddow etc., because the negativity they spout actually counteracts the good chemicals that the aforementioned things stimulate. Similarly, if an online Forum moves from informative and supportive, to an online debate, don't participate. Just choose to not engage. As my doctor said, stay away from toxins, including toxic people. You don't need those chemicals right now. Exercise the discipline of your will and let good stuff into your soul. Not the negative. 

My Spirit - This past Sunday,  I decided I wanted to actually "go" to church, and participate in the worship service because I wanted to sing. Many Sunday's in the past, because of the debilitation of M.E., and because of Ampligen's side-effects, I would watch the services "live" on the Internet, from my bed. TV church isn't bad, but there is nothing like singing along with a 100-member gospel choir to lift my spirits, so if I have the energy, I go. 

The problem with that in the past has been, this is a classic Baptist church in the Bible belt, so there is no such thing as a 3-minute song a hallelujah and then you sit down. Oh, no, no, no- help me Lord! These songs all have 7 verses and 8 choruses, and then we do it all over again. It's lively. It's inspiring. It's a lot of fun. Most of all it is healing. Dr. Graham Welch, Chair of Music at University of London cites research that shows that when we sing, the brain and the endocrine system release healing hormones, endorphins, as well as cortisol and immunoglobulin. When you follow that with an inspired sermon that builds my faith in God, and the future, well, I leave feeling whole. But many Sundays, I just haven't had the energy reserves to get out of bed. Let alone stand with the congregation for all those songs. 

This past Sunday, really having a desire to sing and participate, I said to my wife, "I just don't know if I can do it." 

"Do what?" she said, as she continued putting on her Sunday dress.
"Stand there all that time and sing all those songs," I replied, remembering the choir. 

With echoes of past teachers and fraternity brothers bouncing around my brain, she said the only thing that I needed. 

"Then just sing one. At least you can do that." 

And so we went, and that's exactly what I did. I sang one. Then another one. Then 5 more. For 45 minutes, non-stop, on my feet.

Exercise complete. 


Friday, August 6, 2010

Embracing Reality

I admit it.
I really blew it, big time. Two weeks ago, after my last "glowing" report about how good I was feeling at the 6-month mark, I took it too far, and overdid it. I moved from the reality of my health,  to a fantasy world of my own making, which convinced me I was almost healed. It was not only stupid, but because I knew I was only half-way through the treatment protocol, it was unrealistic.

I've had this problem of moving into unrealistic expectations all my life, even before I got sick.

I remember in the 5th grade, setting up my little home-built "Estes" rocket in the driveway of our Southern California home, convinced that I was launching something straight out of NASA. Based on the big color advertisement in Popular Science magazine, I had convinced myself that my "Explorer" rocket would fly straight up over my house, reach apogee,  take a picture with its little onboard camera, fire off a parachute, and come floating down into my hands on a perfect trajectory. I was an astronaut!

"How cool!" I thought.

Of course it didn't turn out to be quite that cool.

After struggling for an eternity on aching knees with the little battery powered igniter that just refused to work,  I finally had to do the unthinkable. I asked my Grandmother Flo to come over and help me.   Now, you have to know, no 9-year rocketeer ever wants to have to ask his Grandmother Flo to help him do anything, but since she was the only person in our family who smoked, and had fire, I recruited her to my pyrotechnic team. 

"Do you have any experience with rocketry, grandma?" I asked semi-seriously. 

"No," she said, while taking a big drag on her 30th Viceroy cigarette of the day, "but that won't matter a whit. I'm game!" And even with her depression-era manner of speaking, I knew she was.

"Just take your lighter and touch that fuse there,  grand..."
Before I could get the rest of "ma" out of my mouth, I heard a "whoosh" and saw a  the Estes rocket scream into the skies.

Well, in all honesty, to say I actually "saw" my rocket launch would be stretching it - I basically "heard" the thing ignite, and figured by the smoke and the surprised look on my grandma's face that it was airborne. So I looked up expecting to see it soaring, just like the color advertising and pictures on the box illustrated.

Unfortunately, by the time I got my head and eyes looking upward, my rocket was already floating down to earth, barely visible in the distance, about 1000 feet away, dropping like a dead bird right over Foothill Blvd. So I took off running.

By the time I arrived at the busy "touchdown zone" the cars on Foothill Blvd. had already completely destroyed my Estes Rocket.  Had it not been for that tiny patch of cloth stuck on an oil patch in the road, (which I assumed was the "parachute"), I wouldn't have found it.

When traffic cleared I ran into the road, picked up what was left of the debris, and dejectedly walked home. My grandma was there to greet me, grinning broadly with that Viceroy cigarette hanging out of her stained teeth.

"You did it!" she shouted,  while lighting up her 31st cigarette of the day. "That was great!"

"Grandma," I said sadly, "it was nothing like I imagined. I expected it to fly for a long time, and parachute back to me, like the picture on the box. Not just hear a 'whoosh' and have the whole thing over in 10 seconds!"

"Oh, that's the problem with expectations," she said, taking another drag on that Viceroy. "It's a fantasy. But the expectations get us to a place where reality takes over...and reality is always better than fantasy," she said.

"Why is that?" I asked her, sincerely, no longer focused on her stained teeth, but genuinely interested in this Waltonesque wisdom. 

"Because, up until a few minutes ago," she said through smoke plumes, "you were just one of thousands of boys who only dreamed about shooting their very own rocket. But now, I bet you are the only boy in your school who can say they actually did shoot their very own rocket! And 25 years from now, you'll still remember this story, and the fact that it only lasted 10 seconds won't matter a whit."

Grandma Flo was right about everything. I was the only boy who could tell that story, and I milked it every chance I got...at least through Junior High. She was right about remembering it too.   It's been more than 25 years and here I am telling the tale in detail as if it was yesterday.

I guess I still haven't learned how to control my great expectations though.

On the heals of the great report from my doctor and how good I was feeling after my 6-month evaluation, I had moved into fantasy world. I started imagining myself doing things again. I began to get into magazines that had bicycling and hiking themes, remarking to my wife that we should plan a trip to the Rockies.

After being enthralled by a TV commercial about a jazz club opening in town,  I foolishly remarked that maybe I would "take her dancing this weekend."  Even though I was only half-way through my treatment, I started thinking and acting like I was already finished, and completely well. I was an astronaut again, flying rockets in a dream world of my own making.

Then after about 4 days of this bliss, I woke up sicker than I had felt in a very long time. My glutes were killing me. My sciatic nerve was twitching. My back was so sore I couldn't bend over and touch my knees. My head felt swollen. I had brain-fog bigtime.

I had fantasized myself right into a huge flare, and it was my own fault.

I had forgotten that the "healing curve" on Ampligen, or any therapy for that matter, is more like the stock market - up a couple days, down the third. The ups and downs vary day by day, but over months, the curve or slope is slightly up. 

As our systems adapt to the healing process and homeostatis, we take three steps forward, and then two back. Even today, in my 7th month of treatment, I still have good days and bad days. But the bad days are getting fewer, the good days are increasing, and my healing slope is going up. 

But I forgot all of that 2 weeks ago, by not embracing the reality, and letting my dreams get ahead of wisdom.

Doctors and researchers report that most patients who battle Myalgic Encephalomyelitis are former A-type personalities, super-achievers who, before getting sick, dreamed great things, believed amazing things, and created awesome things.  We are personality types who are wired to set unrealistic expectations, distant goals,  and then astound everyone by trying to actually reach them.

Kim Phillips says that in 20 years working with CFS patients in neurophysiology therapy she has never met one who wasn't brilliant. Maybe you don't feel brilliant right now, but you are. Our minds and hearts are more than game...It's just that our bodies aren't cooperating right now.

I confess, I didn't feel brilliant on the couch this past weekend, barely able to stand up. I actually felt like an idiot. But my wife helped me snap out of it.

As I slowly limped into the kitchen, hearing a jazz favorite on the radio, holding back tears I said to her, "I really wanted to take you dancing this weekend, sweetheart."

"So dance with me now," she said, holding out her arms.

And that is exactly what we did. For about 10 glorious seconds, which was just about all the energy I could muster, I danced with my wife in our kitchen. No, it wasn't in a fancy jazz club. No the music wasn't live. And it wasn't anything like I had imagined in my fantasy.

But it was reality. And it was mine.

And just like my Grandma said, I have no doubt that 25 years from now I'll not only remember this dance, but I'll be telling this story in great detail - how I enjoyed embracing reality, by embracing my wife, and danced with her in our kitchen. And the fact that it lasted only 10 seconds won't matter a whit.