Personal observations in
managing energy
by Andy Aldrich, U.S.A.

I believe that the best way to deal with fatigue is to become aware of what causes it and to learn to pace ourselves. I also believe that energy management is a critical part of learning to live with CMT and dealing with fatigue.

I have spent most of my 46 years thinking that I was just naturally lazy. I would usually overdo it with physical activities and be exhausted for days. I could never stick with an exercise program for more than a few weeks because I'd just burn myself out trying to force it. I was in a constant battle with myself over my apparent lazy streak and lack of motivation. In 1997 I finally decided to study CMT and was amazed to discover that weak muscles cause more energy to be expended than normal muscles. What a simple concept! Having weak muscles can cause fatigue! It only took me 43 years to figure that one out!

There are several areas that can be worked on to help manage energy and reduce fatigue. The ones I have focused on are acceptance, exercise, diet, mindfulness and breathing. None are magic bullets, although acceptance is close. But combined they can make a difference.

Acceptance: 1997 was a breakthrough year for me. It was the year I finally accepted CMT as a part of my life. Up to than I was in denial, desperately trying to be normal. I also expended lots of time and energy fighting with myself and with CMT. I think being a fighter is a positive part of everyone who has a disability. But it's important to choose wisely and fight battles we can win. When we fight battles we can't win we just get stuck in a viscous negative cycle. Finally accepting CMT allowed me to get unstuck and started a positive series of events in motion. I was able to finally quit drinking and I had my feet and ankles rebuilt. These two actions led to other improvements in my life. It was acceptance that allowed this positive cycle to happen.

Exercise: In 1997, prior to my foot and ankle surgeries, my doctor sent me for physical therapy. I worked with a therapist for eight weeks. We developed an exercise program that I continue to use today. I found that exercise improved my energy levels, balance, coordination and stamina. It also reduced pain and gave me a much more positive outlook on life.

I don't know exactly how I figured it out but I came to realize that I couldn't force exercise or any other strenuous activity. Forcing it would just exhaust me. What I had thought was laziness - lack of energy and motivation - was actually my body trying to tell me to cool it because my energy levels just weren't high enough to exercise! Now if I plan to work out but don't feel motivated I just put it off until I do feel motivated. Over the last four years I have refined this communication with my body to the point that I can often tell the night before if I will be able to exercise the next day.

As my muscles have weakened I have also had to adjust my exercise routine to compensate. I've gotten rid of some parts, added new ones and modified others. I have been able to adjust because I learned to listen to what my body is trying to tell me.

Diet: Earlier this year I read a wonderful book called Handbook for Humans by James Sloman. It covers a wide range of topics related to the human spirit, mind and body. One of the sections is devoted to diet and nutrition. After reading this section I decided to stop eating meat, as one of the benefits mentioned was increased stamina and energy.

I decided to try a six-month experiment by going on a high carbohydrate, low fat and low protein diet. This diet is based on The McDougall Plan by John and Mary McDougall and was mentioned in Sloman's book. I thought going without meat would be hard but it turned out to be very easy to adapt to. After seven months on the diet I have to say that it has really improved my life. I lost about 10 pounds in the first few weeks and have been within a four-pound range since. I'm sleeping better, waking up earlier and my energy levels have increased. I really notice it during and after working out. I recover much faster and don't get as tired during and after exercising. I also don't sweat as much. There has also been a surprising benefit. For years I have woken up two or three times a week with a headache. Since I stopped eating meat the headaches have mostly gone away and when they do occur they are much less severe. I don't know what the connection is between meat and headaches but I'm very happy about this unexpected benefit.

Mindfulness: Mindfulness is really about slowing the mind down so we can become more aware of what our minds and bodies are trying to tell us. Meditation, body scans and yoga are tools to help in this regard. Handbook for Humans has a lot of excellent information on this subject. Another good book that has been mentioned in the CMT Newsletter is Full Catastrophe Living by Jon Kabat-Zinn. I have found that meditation, body scans and yoga are all very relaxing and are a good way to reduce stress. Yoga is a low impact way to get some exercise and helps to improve communication between the mind and the muscles. It is also very helpful with stretching. I've added some of the yoga stretches to my exercise program.

I used to think that things like meditation and yoga were crazy. But the reality is everyone with CMT has to be mindful every day of our lives. If our feet droop we have to be mindful so we don't stumble. If our balance is poor we have to be mindful so we don't fall. If stairs give us trouble we have to be mindful of the mechanics of the muscles involved. If fatigue is a problem we have to be mindful of our energy levels so we don't overdo it and wear ourselves out.

Breathing: I have also found that deep breathing exercises help increase energy levels. I find that 5-10 minutes of deep breathing really energizes me. The technique that I learned involves breathing in deeply for five seconds, pausing and holding for 20 seconds, than breathing out for five seconds. I do 10 repetitions and try to do this four or five times a week. When I first tried deep breathing I could only hold my breath for 10 seconds but as I got used to it I have been able to work up to 20 seconds.

There is also a rhythmic breathing called Pranayama that is a part of yoga. This technique is mentioned in Handbook for Humans. I have found that 5-10 minutes of rhythmic breathing increases my energy levels for several hours.