Monday, June 15, 2015

Evolve or Die

When a person is hit with adversity, such as a disease or debilitating condition, it will change your life forever. Activities and every day actions that we routinely took for granted in the past have become no longer possible or much more difficult to accomplish. Simple things, like getting dressed in the morning have become more of a challenge for me (mornings are difficult until some of the muscle stiffness goes away). I was diagnosed with a “benign” nervous disorder – Cramp Fasciculation Syndrome (CFS) – and also have some muscle contraction issues. CFS is benign only because it will not kill you, but it can be debilitating and therefore could eventually kill you due to inactivity. I am an avid fitness person, but hiking and running became more and more difficult to do. Although these activities are not impossible to do, the pain and recovery time was just too much. Rock climbing became impossible due to dexterity issues in my hands and feet caused by paresthesia symptoms (it was deemed as being no longer a safe activity). Doctors also advised against wrestling (feeling it too was no longer safe). Unfortunately, many people with chronic Peripheral Nerve disorders such as CFS resort to inactivity. It is just too painful and sometimes unsafe to exercise. However, I am a true believer if we do not evolve, we will waste away and die.

With many past fitness activities becoming harder and harder to do, I turned to biking and now competitive biking. For some reason biking works best for me. Is it still hard and painful? Absolutely. It seems to have made my paresthesia worse in my hands and feet. What’s worse, my right leg muscles including my quads are going numb. That being said, I am still pushing forward because I have less leg pain after exercise. I do not know how much longer I can cycle – 1 year, 5 years, or the rest of my life – who knows. But you only live once and got to make the most of it. After all, I know there are many more people with worse diseases or conditions – so I have no reason to feel sorry for myself and give up.

I have a lot to learn in cycling, such as bike handling skills. I think some of these skills are diminished due to CFS symptoms – paresthesia, balance issues etc.. I believe I will get better, but how much better is the real question.

You can track my USA Cycling results on the below website:

I am currently riding in the lowest category (5). But I am ranked 16th in the country for Time Trial racing in category 5 (all age groups). I would still rank in the top 100 nationally for a category 4 racer. My road racing rankings are not that great, but they are getting better. Colorado is a very large and competitive group of racers (one of the toughest states in the country) and that makes it easier to improve.

I am trying to evolve so CFS does not get the best of me - both mentally and physically. Maybe I am making symptoms worse, but I do know that I feel better about myself when I exercise and fight through it all too even compete at a fairly high level. I also believe that by giving in to this disorder and being inactive will make my health worse, even if symptoms do not progress. I am positive I am making the right choice.

Simply put, I advise people with Peripheral Nerve disorders to evolve and find those activities that they can do (with less pain) and live. We only get one shot at playing the game of life, we must make the most of it.

1 comment:

  1. Congratulations on your adventures in competitive cycling, Patrick! Your ability to channel your energies into different sports and your perseverance in spite of physical challenges are truly admirable. I'm sure it is inspiring to others with CFS to see the way you refuse to let the disease dictate the way you live your life. :)