Fibromyalgia Support Group

When I first became ill in 2005 I was confused and misunderstood. No doctor could tell me what was wrong with me, I was just depressed, they kept saying. And they treated me like a mental case for even asking for medical modification to my work schedule in order to keep my job. I was sick and getting sicker and did not quite believe myself, that is how good they were at convincing me nothing was wrong, it was all in my head. Or my pathetic excuse of laziness to avoid having to be an adult and move forward in life was rearing its ugly head. So blame and question myself I did. Thank God my husband did not. He believed in me and loved me enough to stand beside me the entire time. The entire "mentally unstable bitching, moaning, complaining, lashing out at him because there was no one else to" time. I know how truly lucky I am. I also know that I would not have made it through if not for his unquestioning love and support. I hear tales of spouses leaving, sick and tired of their sick and tired they vowed to love in sickness and health. As money, work and lifestyle all flush down the rabbit-hole of normalcy replaced by chaos, they bail. Leaving a person already so raw and stripped bare completely alone. It makes me angry, and it makes me cry.

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,

Leah

This blog was originally published on 8/13/10 and is an excellent summary of my journey with Chronic Fatigue Syndrome.