I Have Fibromyalgia / Chronic Fatigue Syndrome, but it Doesn't Have Me! A Memoir

Recognizing Fibromyalgia/Chronic Fatigue Syndrome Chapter 1: The First Step: Being Diagnosed “I can be changed by what happens to me, but I refuse to be reduced by it." —Maya Angelou Living with the Frustration of Fibromyalgia before Diagnosis I am alone. I am naked. I am in the bathtub. I am watching the water rise. I have no idea of how I got here. The water is warm and it is getting higher. I am afraid. I begin to laugh. My laughter fills the room and disguises my fear for an instant. Something is really wrong with me. I sense it, feel it, but I don’t know what to do. I can’t remember how to turn the water off. I am waiting for the flood. I am alone. I am in my car. The engine is on, but I’m not moving. I’m confused. Something is very wrong, but I don’t know what. I am alone. I am dressed. I am at the grocery store. I need to get some tomatoes. I look down at my hand and at the plastic bag that I am holding. I start to sweat. I stare at the bag, unable to open it. I am clueless. I am dizzy and nearly faint. What is happening to me, to my body, and to my brain? I am alone. I am in the kitchen. I smell something so potently foul, I am sure that it is a dead rodent. I call to my husband to come in and have a smell. He smells nothing. The odor is very strong. He smells nothing. I am convinced that something has died in our kitchen, maybe in between the walls. I am alone. I look into the mirror. I see someone. It’s not me. I am trapped in a body that is not my own, with a memory that has failed me. It’s early September, my most favorite month of the year, but I am too sick to care. I am thirty-two years old, newly married, a wife, a stepmother, a high school Spanish teacher with her master’s degree. I love to travel and to help others. But, I ask myself, “Who am I?” I spend the next year with a throbbing daily migraine headache that pierces through my face and eyes. My vision comes and goes. Pain soars throughout my body. One day, I can’t move my hands and fingers. The next day, I urinate fifty times within an hour. I can’t sleep. I have problems swallowing. I can no longer read or write. My eyes and brain don’t allow it. I pray to God that this is not MS. Every day, this headache is getting worse. My ears are ringing. My eyes can’t tolerate any light. The left sides of my face and body are frozen and numb. I hear buzzing, hissing, and extremely high-pitched noises. I am hot all the time and dripping wet with sweat. I am burning up from the inside out. My heart pounds and I feel shaky. I can’t remember simple things. I am exhausted. I am angry and I throw fits of rage. “I need help!” I scream in between sobs to my husband. I don’t know what I am doing. My frustration is building. Please, I beg, help me. Please help me get out of the tub and get dressed. I can’t do it by myself. I don’t remember how. I am weak, tired, desperate, and drained. How do I walk? My left side won’t move with the rest of my body. I feel my leg, yet it’s like dead weight and tingly right next to me. I can’t move it without telling myself to lift it up. What’s happening to me? My short-term memory is failing. I can no longer concentrate. I did just put the conditioner in my hair, right? I am “bedridden” without a bed. For three and a half months, in between trips to local doctors, I spend my days and my nights flat on my back, in the dark, on a futon mattress on the floor in our living room. I can’t walk up the stairs to my bed. My body and brain won’t allow it. I am too weak, my muscles are stiff, and I am extremely fatigued. Fear grips me. The life that I once knew is gone. And I know deep down in the core of my being that something is really wrong with me. I am trapped in a body that is no longer my own. I can’t go to work, can’t read, can’t write, and can’t watch television. I cry every day after my husband leaves for work, and I remain here in the dark on this futon mattress on the floor. I contemplate suicide several times. I never truly believe that I want to die—although my daily pain is unbearable—and if God willed death upon me, I would welcome it. My husband Josh, who is a teacher, comes home from work. He is worried about me. The next morning, he can’t believe what he sees. This is not the woman he married.