Thursday, January 11, 2018

Why Torture the Body with Unnecessary Pain

My wife asks me questions like “why do I put myself through so much pain and agony with cycling?” or “why do I have to compete in cycling?”. She is right, I do not have to compete or put myself through so much pain in races or training. After all, I have a perfect excuse to avoid pain since I am already in pain with a neurological disorder. Thus, it defies logic and commonsense to enhance my pain levels. However, I have explained some of my reasons in the previous posts: For instance, having the good pain from training helps mask some of the bad pain from the neurological disorder. That is one important reason for my dose of daily torture on a bike. But there are other reasons as well.

Just eight to ten years ago I was being tested for sinister disorders such as ALS and MS. Everything came back negative, but I had the tests redone a few years later to double check the results since I was still convinced I had something majorly wrong with my body. These results also came back negative. Although, I was diagnosed with Cramp Fasciculation Syndrome (CFS), it could have been worse so I find myself as being very lucky. If I had ALS, I would currently be dead and not writing this blog post. CFS is no joy, but it is better than the alternatives. So, in my view, I was granted a second chance at life since I was convinced that I was dying just a few short years ago. When you get a second chance at life you not only realize that life is short and precious, but you also understand that you are mortal and life can end at any moment without notice. Most of us take life for granted, I know I was in that group. You need to make the most of life regardless of the adversity or the situations you may face. Furthermore, I was told that exercise intolerance was a sub-symptom from all the primary symptoms of my CFS disorder. My life was going to change for the worse because I would no longer be able to exercise with intensity or do many of the activities I love anymore. The doctors were partially right. I found certain types of exercise and activities no longer possible because of both extreme pain levels and safety concerns over paresthesia symptoms in my hands and feet (such as rock climbing). However, for some unexplained reason, I can cycle. Sure, it can be painful (proportional to the intensity of the workout), but it has been manageable. All that being said, each day it is becoming more difficult to ride (slightly, but more difficult none the less). The strange thing is that although my pain levels are going up after riding, I continue to improve. No one can explain this phenomenon.

Therefore, I try to explain to my wife what if she thought she would eventually lose the ability to cycle, wouldn’t she try to make the most out of what time she had with the activity? If she was given a second chance at life wouldn’t she try to make the most of it and pursue goals that have eluded her during her lifetime? If she was good at cycling and getting better even though she is in her 50s with neuro disorder, wouldn’t she want to know how good she can be, especially understanding it could be taken away without a moment’s notice? You have one chance at life, would she regret not making the most of an opportunity? Wouldn’t it be a crime not to use my legs (although in pain) when so many others are suffering around the world and they literally cannot use their legs? Sometimes we fail to realize how fortunate we are in this country and how lucky most of us are to have the freedom to do almost anything that we want. But when you lose many of those freedoms wouldn’t you want to make the most out of what freedoms you still have? Unfortunately, we never realize how much we miss something until it is too late and it is gone. And although I have evolved, I surely miss the activities I can no longer partake in, but I will not have any regrets when and if cycling is taken away from me. I am riding with passion and conviction every day. I am giving it my all. I will miss cycling if it taken away from me, but I know I put every ounce of effort behind the sport on daily basis, so I will have no regrets.

1 comment:

  1. My CFS came after a GBS that progressed to CIDP. For 3 months I was paralyzed neck to toe and ventilated. Several times I was sent to inpatient rehab but became paralyzed again. Finally with continued immunoadsorption my nerves started to come back. After 4 months on the ward, a few in the wheelchair, 3 months of 6h/day rehab and another year of physiotherapy twice a week I live fully normally. Except the CFS that now came out of the blue. Fortunately with increased immunoadsorption and low stress it is manageable.

    My greatest gratitude is that I left the USA, where I would probably still be in a wheelchair, would not have gotten 65% of my salary for the year+ ordeal (100% for the first 42 workdays), would not have had all physio, speech and psycho -therapy paid for. And most importantly, I would not continue to get Immunoadsorption with the best filters in the world (Miltenyi Therasorb) 1-2x a week 100% covered. Firstly, because they are not even available in the US, and second because no American insurer will pay for IA for CIDP unless life-threatening. Also here in Germany you can do it vein to vein and do not need a shunt or central catheter. I have decided America is too cruel to its sick for me to return. (And I've become a big fan of the trains, the $1 beer and 6 weeks vacation. =))

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