· Acclimation to a disorder may be the most important item in dealing with any disorder. Unfortunately, most people do not have this advantage – the disorder just hits them hard over night. Whereas, I was suffering from BFS and or CFS at a young age (I just did not know at the time). My symptoms have slowly progressed over my lifetime. This has helped me acclimate to the disorder.
· Pain tolerance can play a role in overcoming exercise intolerance. Pain is relative and I am not saying others with CFS have less pain and I have more pain. However, the fact I was physically abused as a child may have provided me with more pain tolerance as an adult. For instance, as child I had to live with broken bones that were not treated.
· Overachieving is paramount. I do not necessarily compete against others, but myself. I work each day to improve my times. Besides, I am always out to prove people wrong. Every time someone like a teacher or parent suggests you should not go to college or a doctor says you cannot exercise with intensity anymore – I want to show them they are wrong. After all, nobody likes being told what to do. When I put my mind to something, I am driven and will get it done. I have always been stubborn and an overachiever.
· Exercise redundancy is key to training the body and mind. I was an extreme athlete and have exercised my entire life. Intense workouts were common for me throughout my life. I also find it helpful to work out every day. In other words, it is important to train our brains and bodies that we need exercise and to feel bad if they do not get it.
· Adaptation is important – it is okay to change goals. Darwin’s theory of the survival of the fittest applies to all living things including humans. Hence, humans must also learn to adapt when they are hit with life altering adversity. The mistake many people make with CFS is to try to do the same types of exercise they did in the past. But this may not work. I was an avid runner and my body no longer likes this type of workout. I went from running 5K in 20 to 22 minutes 6 to 7 years ago to nearly double those times today. And what’s worse, my recovery time is several days if not weeks if I have bad cramps and pulled muscles. I have adapted and now hike and bike which seems more bearable for my body. If we do not adapt our exercise program than we will perish from heart disease, cancer, or diabetes.
· Acceptance of any disorder is key to moving on with life. Many people with BFS or CFS continually fear they have a worse ailment such as ALS or MS. After all, many BFS and CFS symptoms are onset symptoms to these deadly disorders. What’s worse, it is hard for educated people to accept what they have is benign especially if doctors cannot explain what causes BFS and CFS. Since there is limited research on BFS and CFS doctors know little about the disorder and cannot answer simple patient questions. In fact, I have seen 5 different neurologists looking for answers. Thus, it is hard for people to accept what they have and finally move on with their lives. But not being able to accept and move on causes a great deal of stress and exasperates symptoms.
· Managing stress may be the most pivotal thing we can do for a healthy lifestyle. Stress can wreak havoc on our lives and it can exasperate symptoms in BFS and CFS patients ten-fold. For the most part, I am doing a better job managing my daily stress factors. One thing that has helped me on this front is, for example, having a set daily routine.
· Draw inspiration from others. My climbing partner has Parkinson’s disease and my doctor has one leg. Both are great athletes and inspire me to fight through my disorder.
· Put your disorder into context. I have said it before and I believe it: “I am lucky”. There are people coming home from war with no limbs so where do I get the audacity to complain about a benign disorder (although I do not actually believe CFS is a benign disorder as doctors’ claim). There are literally hundreds of neurological disorders and BFS and CFS are probably two of the best you can get. Most are crippling and deadly. I always tell myself: “It can always be worse”. This puts you in the right mindset to move forward.
Finally, I was always taught not to complain unless I can do something about the problem or issue. I am using my engineering and data analysis background to do a statistical analysis on these disorders. Still, I am trying not to complain too much (it is hard).