I occasionally receive negative comments on my blog from persons with CFS and FMS. This happens most often when I attempt to connect with others in on line support groups. I understand that this is part of presenting material on the Internet but nevertheless it is disturbing. The fact is there are many people with CFS and FMS that are resistant to hearing about avenues of healing that they are not familiar with and suspicious about stories of recovery. Some cannot understand the complexities of the topics I write about and want a simple explanation for their condition. Some have even questioned my motives for writing about the treatments that have helped me and the validity of my experience. This is sad indeed yet I try to not take it personally. I know that these responses stem from fear and suffering that is part of the CFS and FMS experience.
Persons with Chronic Fatigue and Fibromyalgia are victims of a medical system that does not understand and does not know how to treat their disorders. Most have spent an inordinate amount of time and money seeking medical help with no positive outcomes. They have been beat up by doctors who invalidated their symptoms, dismissing them as psychosomatic, and they've been strung along by others who bombarded them with drugs or claimed they could help but didn't. They've tried so many things that did not work that they have given up hope of ever living some kind of normal life.
The most difficult thing about my personal health search was dealing with the disappointment of failed treatments. For the 5 or 6 therapies that made a significant contribution towards my recovery there were 50 or 60 that didn't help at all. To get an idea of just a few of the therapies that I tried unsuccessfully read my post "What Didn't Work" fibrofriends.typepad.com/fibro_friends/2009/07/what-didnt-work.html. Every time I started a new treatment or therapy I was hopeful that it would help. When I got to the point where I knew this was not the case I was devastated but I did not give up trying. In retrospect I realize that I learned something from each of these experiences which ultimately helped me solve the puzzle of my health condition.
One of the most pivotal experiences of my health search was spending three months at the Fibromyalgia Relief Center in South Lake Tahoe, California in 2007. This was the first time I had the opportunity to talk with others who had similar health problems. This group of people was so determined to get better that they were willing to travel long distances, to be away from their homes and families for weeks at a time and to invest a considerable amount of money. I was impressed by their optimism, their faith and their courage. In almost every case I heard the same story. They wanted to get well to give back to others and to fully participate in the lives of their children and grandchildren. Although many of us experienced improvements from the treatments at Tahoe, for the majority the relief was short term. Over the months after my stay I heard from one person after another whose health relapsed. Some were so devastated by this and set back by the financial losses that they gave up trying additional therapies. Meanwhile I had made the first significant breakthrough in my recovery with Oral Systemic Balance. My motivation to start my blog was twofold: First to expose the truth about the "Whitcomb method" through first hand reports from patients who were at Tahoe, and second to share information about therapies that were beneficial for myself and others.
The suffering for persons with chronic fatigue and fibromyalgia syndromes is off the charts and presents a spiritual challenge. How can one feel at peace when one is thoroughly exhausted, cannot sleep and is in chronic pain? How can one feel safe in a body that is dysfunctional at every level? How can one endure this state day in and day out, year in and year out with no relief in sight? How does one maintain the will to live in these circumstances? The answer is simple: by faith, hope and love. This may be easy to say but try living it. My illness required every scrap of courage, patience and intelligence I could muster and a lot of support from family and friends. There were long periods where I wondered if I could make it through the next hour, let alone the next day. It was at these times that I reached out for emotional support often spending an hour every day on the phone with my best friend who sent me a charm with "H O P E" inscribed on it, which I put on my key chain. Her support and that of so many others was unflinching. Their message was clear: "Don't give up!".
Some say that it is a miracle that my health has improved so much. I say the miracle is that my spirit endured through years and years of unbelievable physical hardship. I got better because of my perseverance, my financial capacity to explore every lead, and ultimately because of revolutionary medical treatments that reversed my condition. We are living in an exciting time where breakthroughs are being made in the treatment of chronic health conditions. It may be years before the mainstream or "alternative" medical communities embrace these but people suffering today don't have time to wait. As I approach the finish line of my recovery I am not giving up on others out there. I want to shout from the top of the mountains: "Don't give up! You can get better! There is hope!"