I searched for support groups, someone to tell me I was not loony, there were others that understood and had been there, were there, for crying out loud! But every attempt, every turned-over stone left me so very alone as no real network ever revealed itself. So I just gave up, and got desperate, and threw my credit card at what my research showed was my best bet. Clearly this was not something I could live with so I set out to get over it. It, the still unnamed disease that was quickly disintegrating my body into a mush of pain, exhaustion and fear. It did not hold a promise of any kind of future. I was disabled and had to return to work! I was 28 years-old and had to get better. Better from what, I still did not know. A private and specialized Fibromyalgia and Chronic Fatigue Syndrome clinic was my high priced saving grace. They diagnosed viral infections of CMV (Cytomegavirus), EBV (Epstein-Barr Virus) and HHV-6 (Human Herpes Virus-6) as responsible for Chronic Fatigue Syndrome, along with many other bacterial and fungal infections allowed by the breakdown of my central nervous system from the viral infections. They understood and had success in treating patients with this condition. They exploited the best of holistic and modern medicine to their advantage and I did recover, strengthened my immune system so it flipped on top of the viruses and their symptoms did not rule my life. I took a drug that was a major risk, Valcyte. A cancer-causing carcinogenic, it was a powerful anti-viral and no joke. And there was no guarantee it would work, for it was still in clinical trials. I had to make a decision, was potential quality of life now worth potentially cutting my life short at the end? Hell yeah it was! And it worked, after two rounds and tons of other drugs and a bunch of other stuff. But by then Fibromyalgia had settled in, my nerves damaged from such a long journey of untreated infection, and went wild in an epic battle. I emerged as victor and got it under control. That is where I sit today. In remission from CFS and managing my Fibromyalgia. My life is not what it was before, but is so much better than where it had been.
If I can offer any words of encouragement to my fellow Fibro friends it is to keep searching. Search for the support of those you know and love, search for the friendship of others that understand and are in the trenches with you. Search for doctors and medicine to heal and manage your daily life, work and responsibilities. Search for a way to laugh a little bit every day and find a way so this illness does not control you. Oh so much easier said than done, I know, but as long as you are living a life, it mine as well be a life worth living.
Thanks for joining,
This blog was originally published on 8/13/10 and is an excellent summary of my journey with Chronic Fatigue Syndrome.