-1- INTRODUCTION -*- ANOTHER "VIRUS" It's happening again, Someone brought home a bug then everyone else brought home the bug. It jumped from person to person Missed a body on first pass caught it by the third. Wonder's be, it missed me! NOT ^^^ Everyone is down with the bug Some unfortunates got it twice Maybe there is bugs times two, I hope not bugs times three. Everyone is over the bug Everyone but me. Once again I'm down and out, out for the count. After three days I don't feel ill Just damaged. The body's sluggish, doesn't work. The main computer is buggy again. Systems burp and fail only to Come back in line, In about a month I'll feel like my old self Again... I HOPE. P.Griffiths, 1992. WELCOME TO MY WORLD Welcome to my world. It has taken me several years to compile this book. Many times I have sat myself down at my computer, or with pen and paper in hand, to work on this book. Needless to say, also many are the times I simply put it all aside and forgot about the whole thing. Eventually I would take up the task once again. I had to. I needed to put into written words what the life experiences were all about, in hopes that if I did just maybe I would be able to figure it all out and find some sort of meaning in it all. Along the way I found others like myself, and thanks to the wonders of computers, modems and electronic mail (e-mail), I have made good friends and found out how much our patterns of illness are alike, or can vary. It is with the help and encouragement of these friends that I have once again taken up work on this book. Their words, their lives are echoed here as well. When we speak as many, we are one: As we speak as one, we are many. NOT ANOTHER SELF HELP BOOK This is not a self help recipe for recovery type of book. I don't feel that I have found the answers myself, let alone would I feel comfortable trying to pass myself off as some kind of expert. I have not "recovered" from my illness, I have survived in spite of it. This is not a book focused on the physical manifestations of the disease itself either. In Appendix One I have tried to outline the clinical aspects of Chronic Fatigue Immune Dysfunction Syndrome a.k.a Myalgic Encephalomyelitis a.k.a Chronic fatigue Syndrome. I am not a physician, clinicition, or healer and do not lay claim to being any sort of expert in these aspects which relate to my illness. There is much controversy surrounding these issues, and no set answers to questions of causality, contagion and no glimmer of control or cure. What this book is designed to be is a look at life from the viewpoint of a person going through a process of a controversial, debilitating, invisible, chronic illness. Herein is the proverbial "worm's eye view". This is a book that will hopefully give unafflicted persons a personal look into the confusion, pain, and sometimes despair facing those of us with Chronic Fatigue Immune Dysfunction Syndrome/Myalgic Encephalomyelitis (CFIDS/ME). This is also a book to that I hope will tell others facing this battle that they are not alone. MY STORY - OUR STORY My story is full of my pain, my anguish, and the frustrations of myself and those who love me. As I mentioned earlier, I wrote this book in pieces. I wrote on separate topics and issues, as files on my computer discs and sometimes rambling entries in my journal. It is my life, sometimes at the moment it happened; sometimes in retrospect. The material is highly personal, and often it has been very difficult to write about. It has not been an easy task to bare my most painful and vulnerable moments for public scrutiny. But if by these words, just one person's eyes are opened to the sufferings that are faced by those afflicted by this terrible condition, all of my pain and effort in writing this book will have been worth it. THE PROCESS OF WRITING THIS BOOK BEGINS In 1991, I began my book project, when I finally became aware of the name and face of the Demon that had been haunting me since my mid-teens. Having been put onto the trail of unmasking my source of torment, I joined a local support group that was then known as "The Vancouver Island Prolonged Viral Infection Association" (known since 1995 as MEVA: "Myalgic Encephalomyelitis Victoria Association"). I did not start out with any intention of writing a book. What I did do was to write for the support group newsletter in poetry and essay. I wrote articles on Hypoglycemia and reviews of books I had read on CFIDS/ME and related conditions. I wrote to clarify in my own mind what I was learning. If I could make sense to others, then I must be comprehending the material myself. As time progressed, this book grew into being almost on it's own. You see, I had been a researcher/writer by profession, I attacked my demon in the only way I knew how - by learning all I could and combining it into a coherent form. I thought that if I could learn all there was to know about it, then I could find its weaknesses. I was used to finding out what was wrong and fixing it at the source. I did not want to think of the possibility that this was not something which I could conquer in this way. I was too busy fighting to see what was happening to me. I managed to get worse before I realized that forcing "willpower" upon the body, only fed the "won't-power" of the illness. I learned, eventually, that only by surrendering that willpower, could I overcome the terrible won't-power I faced. Determined, frontal attacks on it were hurting me. Passive resistance, spirituality, faith, and love: these were the paths to walk and the tools to use. In January of 1995, I began in earnest the work of compiling my scraps and pieces of written text into some sort of coherent form. It has been a process of stop and start, a draft manuscript that drew some interest from a publishing house but a draft still in need of much work. More work than the small publishing house was able to provide. The manuscript sat in a box until, with that aid of my dear friend and editor, Lisa Strenger, and our computer modems, that the long process of completing this book was begun. March, 1995 I'm getting there I think. I'm not sure about it, But... Possibly I am correct I really might just Get there yet One thing's for sure And that's I'm trying. Sometimes I feel lost, Really lost. Hopeless even, Even yet. What else can I do... but do ?? P. Griffiths, 1995