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Sunday, July 28, 2013

CMT Moments

Doug Bolton and Chris Wodke at the Omaha Triathlon
"The spirit is willing, but the body is weak." -Matthew 26:41

No race report today, no victory, no joy of crossing the finish line, No race report because I was a no show for today's race and I don't feel good about it.

I had expected to write  today about the Wacounda Sprint Triathlon. I was supposed to race this morning with my friends at Dare2Tri. They had arranged for all 7 paratriathlon categories at this event, but I had a CMT moment.  There was a pretty good chance I would have another first place finish.  My body certainly was weak this morning.

I knew this race would be risky. It would be my third race in three weekends. Last weekend I competed in and won the Midwest Regional Paratriathlon Championship in Omaha.  The race  experience included a nine hour drive each way. In addition I was on my feet for hours at the Kids Triathlon the day before.  So I knew I was pushing things with a third race.

I did not sleep well on Thursday or Friday night. I took a sleeping pill on Saturday to hopefully get some decent sleep. I went to bed at 6 pm because I was so tired, but could not fall asleep even with a pill.  At 9 pm I was checking my email because I was still awake. I have struggled with sleep my whole life. How is it possible to be so tired and not be able to fall asleep? I cannot tell you how stressful it is to watch the hours tick by and not get the sleep I want and need.  With each passing hour I knew my chance of getting enough rest to do the race was slipping away.

I finally fell asleep and was asleep at 3:15 when my alarm went off. There was no way I could get up and drive an hour, wait 1 1/2  hours in 50F temps to run an 1 40 minute race. There was no energy. It was a CMT moment.

Fatigue is one of the biggest issues I fight. I wake up tired every day.  When I line up for a swim at a triathlon, I look at the buoys and they look so far away. I wonder where I will find the energy to finish the swim. I think the same thing when I stand at the starting line of a marathon or half marathon.  I wonder how I will make it to the finish when I am so tired. I usually do, but some days like this morning I don't even have the energy to get to the starting line.  Some days I struggle to get through the day or to make it through the drive home from work. Many days I work out right after work because I am afraid if I wait too long I won't have the energy to work out at all. Some days I have to nap for an hour because I cannot function without the nap. Usually I tell myself the tiredness is not real, it's CMT tired. Usually that works for workouts and normal day to day stuff. At 3:15 this morning, my body was not taking any excuses.

I had another CMT moment after the race in Omaha last week. I was taking my gear bag to my car. I was parked on a grass field and had almost made it to my car, when suddenly my right ankle turned and I was on my knees. Skinned up the left one pretty bad. It hurt when I fell and I paused a bit before I got up. Another athlete also going to his car called out to me to see if I was OK. I felt like saying, "Yes, I am just having a CMT moment."

As an athlete I train so hard and am so in tune with my body. It is so frustrating because I can't predict it and I never know when I am going to have a CMT moment.

When I went to the medical classification for the United States Cycling Championship, the assessor used that rubber hammer to test my arm reflexes. I have none, although the testers are only looking for brisk reflexes which are a sign of MS. I wish the assessor could have traded places with me that evening. My arms ached from the reflex check so bad I could not sleep. Another CMT moment.  I get that same pain most days I do yard work or type most of the day.

I never know when I am going to have a CMT moment although tripping and falls are becoming more common. I often trip at work when I go to get copies from the printer. If I knew when the extreme tiredness was coming maybe I would not plan a race or make plans with friends.

I had to apologize to the director of Dare 2 Tri because I did not show up this morning. I feel like I am irresponsible and not to be counted on when I do something like this. I hate that feeling almost as much as being so tired. I want to show up when I say I will be somewhere or keep my commitment to friends. Many times my fatigue and slowness keep my from group bike rides and runs. So having CMT can also be a bit isolating. Sometimes I feel like only those with CMT can understand what it is like to live with this condition.

I know I am lucky and I don't write this for anyone to feel sorry for me. I sometimes think because I am pretty active and successful that people think I don't have any struggles. Someone recently told me they thought I was really negative about my experience about Nationals. To me it was not just about getting in, it was about CMT being recognized as a condition that presents real challenges to a CMT affected athlete. I would like someone who thinks I don't have struggles to trade places with me for one day or even one race.

Everyone that has CMT and I mean everyone has challenges, even if they look perfectly fine. For many they live with constant pain and diminished use of their legs and harms. Many also suffer from the extreme fatigue  I feel. I know I am blessed to complete at the level I compete. I share my struggles to let others with this condition to know it is OK to struggle as well. It makes me human and I am being honest.

Before I was diagnosed with CMT, I had retired from athletic competition because I was so puzzled by my slowness, burning feet, fatigue and other CMT symptoms. When I was diagnosed I knew because of the ability I did have, I had an obligation to try and make a difference. I hope that I and the other members of Team CMT are making a difference and bringing awareness, even if we sometimes have a CMT moment.

Chris Wodke
Founder & Manager Team CMT

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 127 members in 27 states. We also have members in Canada, Vietnam, Turkey, Finland and Iran. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

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