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The Pain Behind the Mask, Volume I is a book about the author's utter bewilderment with her health and the sheer hopelessness of trying to find help. It's about discovering that she has fibromyalgia and the ensuing search for a cure. She describes being overcome with despair and guilt because of the disease’s effect on her family and loved ones. You will read about Carol’s journey of discovery and enlightenment. It starts with understanding fibromyalgia, progresses through coping techniques and finishes with solutions that take her from barely existing to living life again.

Preface

October 1989,

“I feel as though I’ve been left in a dark, cold pit; cut off from all human contact. I feel so alone. I have no one who really understands what I’m going through and the loneliness is unbearable. There is no remedy. No one has been able to help me. Total hopelessness surrounds me. I panic and feel a desperate desire to ‘get out’. I imagine myself, again and again, crawling up the sides of a pit only to slide down exhausted. Life is darkness that has no end. I can’t see anything. Gloom envelops me like a heavy shroud. I’m too weak to push it off. I can scarcely breathe. I feel totally abandoned by God and all living form. There is no comfort or ease of pain in my soul. I’m no longer in control of myself physically, emotionally or mentally. This is affecting every aspect of my life: children, husband, friends, career and every goal I have. My life is beyond my control. Day after day my heart is filled with relentless anxiety, dread and fear. Terror grips my soul. “Will this go on forever? Will I ever get out of this dark hole? Will I ever make it to the top again where the sun shines?” My only companions are my tears. Somehow they give me some measure of comfort; perhaps because they’re the only normal thing left. Thoughts of what I want to do to myself to end this horrible misery make me fearful and confused. “Where are You, God? I desperately need help….”

If you’ve experienced these feelings or asked yourself these same questions, then you can identify. If you’ve lost your quality of life and are desperately looking for answers, keep reading.

Today it’s 2005 and as I sit here attempting to put into words what it’s like to live with fibromyalgia, it’s hard to believe I ever had thoughts as desperate and dark as those expressed above. Today I’m out of the pit. I’m dancing in the sunshine again. My heart that was full of fear and despair is now full of hope! Hope that I didn’t have when I wrote that excerpt in my journal.

In fact, only my journal helps me to remember what feeling that way was like. Page after page describes my struggle to endure endless days of feeling unmotivated and purposeless...days of feeling numb, yet anxious. As I read, I’m reminded of the many days I felt as though a black cloud hovered over me and foreshadowed something dreadful. The years of suffering didn’t fit in just one notebook. My descent from normal health to major deterioration is recorded in several.

Journal entries were a litany of self-doubt and self-imposed guilt. Questions plagued me: “What’s wrong? Am I going insane? Do I really have a problem or is this just all in my mind? Who am I? Do I need to see a shrink? Where have I gone wrong? Am I a failure? Am I a lazy wimp?”

There were books that told me about fibromyalgia. They didn’t tell me about all the mental and emotional suffering. If you’re like me, you don’t look sick to those around you. You go around smiling and pretending you’re okay. No one knows about the utter misery and despair you’re hiding. I do...I was just like you. I wrote this book to tell you that someone understands the pain behind your mask.

I know about wanting to die because the fatigue and pain become unbearable. You hurt beyond description. Just about anything, even the simplest task, is a mountain to climb. Exhaustion prevents us from holding a phone or signing our name.

I’ve lived with the same brain fog that makes you feel so stupid, you weep with frustration. I understand the battle you wage and lose trying to control your depression. I also understand the incredible loneliness and humiliation you live with on a daily basis.

I see and understand the disease that lies hidden, wreaking havoc in your body and de-energizing every cell it chooses to invade. I know about your pain and I hear the silent screams. Like you, I became master of disguise. I too became so weary of living with an ignored disease and hiding my suffering that I often wondered if the best solution was to end my life.

The inspiration to put on paper a description of what life with fibromyalgia is like came from the posts I read on the GuaiGroup list and the many e-mails I received. I realized that so many of those suffering with fibromyalgia have a difficult time expressing what they themself don’t understand. Our cognitive disabilities, fatigue and emotional instability blocks much of our thought process. This leaves family and friends oblivious to or with little understanding of what their loved one is experiencing. I wrote this book so that a fibromyalgic can hand it to someone and say, “Here, read this. This is me.”

The Pain Behind the Mask, Volume I, is my story about a journey of living with fibromyalgia and all I’ve had to surrender to it. It’s about the many mental battles I’ve fought along the way. With this book, I want to share how I came to understand fibromyalgia, and in doing so help fibromyalgics learn how to cope with its complexities.

I applaud the persons reading this book in hopes of understanding how fibromyalgia is affecting a friend or loved one. I hope you continue reading to the end in spite of it being a subject you might not understand firsthand. I would like to write this in a more humorous and entertaining way, but that would be making light of a disease that has tragically devastated lives and shouldn’t be taken lightly.

Come walk with me through these pages and I will help you understand the stranger in your body that came with an unwelcome disease. A disease that in so many ways remains mystical because of a general ignorance on the part of those in the medical world. My wish for you is that as we walk together through these pages you will be empowered to accept your fibromyalgia, learn how to cope with the challenges this disease brings into every fibromyalgic’s life and then through my story learn about a solution to all your pain and suffering...

(The following are excerpts from the various chapters.)

For 34 years, my life seemed quite normal. I was a busy and productive person. I managed to accomplish my goals even though I was susceptible to most viruses that came along. At age 16, the Hong Kong flu knocked me down for a while, but as usual, I was able to bounce back to a normal, healthy life...

This changed in 1977 when I had an emergency appendectomy. Instead of bouncing back, I began to deteriorate physically and emotionally...

By 1988, an all-consuming fatigue kept me down most of the day. However, being down with hardly an ounce of energy didn’t matter anymore because this mystery disease was leaving me without a brain. Brain function was so debilitated I could no longer function outside of the home. Even to run brief errands was an impossible feat...

The numerous theories about the cause of fibromyalgia are a testament to the complexity of this insidious disease. A disease that’s prevalent in all ethnic groups and in all parts of the world. It affects both women and men... It’s estimated that five percent of the adult population suffers from this disease, although Dr. St. Amand believes the actual rate is higher....

“Fibromyalgia doesn’t dependably cause the same complaints in everybody. Symptoms affect widely disparate parts of the body. This can make it difficult for doctors to grasp the connections among foggy brain, pain in the neck or knee, frequent bladder infections, brittle nails and poor hair quality, and understand them as relevant symptoms of the same illness...”

So what is Dr. St. Amand’s unique treatment that differs from other treatments currently used in the medical field? His method of treatment is with the drug guaifenesin...

“With this treatment, symptoms and pain reverse and disappear completely in most patients. Other individuals resume normal lives with minimal residual problems..."

Today because of the extensive research that Dr. St. Amand and other doctors have done, an expanding group of doctors is embracing Dr. St. Amand’s theory that fibromyalgia is an inherited systemic disease with various and sundry symptoms. These same doctors are now diagnosing many syndromes as fibromyalgia and have adopted his guaifenesin treatment...

The first hurdle in learning to live with fibromyalgia is learning to surrender to an invisible disease. I use the term invisible because, even though we may have swelling in our muscles, skin irritations, etc., all the tests taken for our symptoms come up negative. We’re told, “Nothing is wrong. You seem quite healthy...”

Yet every fibromyalgic knows that something very insidious lurks in their body, randomly choosing where it will invade and cause the most grief. Although we all suffer with many similar symptoms, we each seem to have our own special complaint of where it has chosen to manifest itself. We will each have to surrender to whichever symptoms we have if we want to coexist with fibromyalgia. Recognizing and acknowledging all the pain this disease creates, physically and mentally, will begin the process of submitting to a disease that has taken over our life...

My physical breakdown pushed me to the point of insanity, so it seemed. I became an irrational woman struggling with emotional problems that were even more intimidating than the physical challenges. Maybe it was because the former was a silent, unseen battle, whereas the latter was more obvious. In hindsight, accepting and dealing with the physical disabilities was much easier than tolerating and surviving the emotional unraveling that took place...

My behavior baffled me. It was temperamental and one of scattered emotions. The person who was evolving alarmed me. I no longer had confidence in my judgment or the ability to resolve problems in any of my roles...

It seemed as though I only existed. Dreams and ambitions vanished. I had no direction or goals. There was no pathway—I couldn’t visualize my journey in life anymore. I couldn't see how I fit into the scheme of things since I couldn't live my old life, and I was having a hard time adapting to this new one. I was caught in between...

Trying to function in a body that no longer felt like my own was very difficult. I didn’t want to accept this stranger that now lived in me...

Sitting all alone in my house, feeling lost and unanchored, I had nothing to do but reflect on what I had become. I had no ambition to be productive; nothing motivated or inspired me. I had no goals. I didn’t care much about anything...

Since I started the guaifenesin treatment, my life is no longer “on hold”—I'm busy reversing. I no longer feel like a blob of nothing. I’m a fibromyalgic who has inherited a disease and someone who’s going down a different road than originally planned...

The Pain Behind the Mask - Volume I, will help you identify all you’ve lost to fibromyalgia. It will aid you in describing this insidious disease to your loved ones. Knowing that you aren't alone in your suffering, will bring comfort. Most importantly, it will remind you of your intrinsic worth and essential value. This reminder will provide you the motivation and drive needed to recover your identity under all the pain and fatigue endured every day.