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I Have Fibromyalgia / Chronic Fatigue Syndrome, but it Doesn't Have Me! A MemoirSIX STEPS FOR REVERSING FMS/CFS
By Chantal K. Hoey-Sanders
Balboa PressCopyright © 2011 Chantal K. Hoey-Sanders
All right reserved.
Chapter OneThe 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 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.
He sees that my face has sagged. I cry out to him that my left side is numb, including my eye, tongue, and face, all of it from head to toe. It is 5:00 AM. He calls my doctor's answering service and leaves a message. In another fifty minutes, he will leave for work, an hour's commute by car, and I will be home alone, again. I am afraid. I don't want him to leave me.
He decides not to go to work, instead, he arranges for a substitute teacher to take over his classes, and brings me to a neurologist.
The neurologist's findings, a rare illness called CADASIL, prompt our Mayo Clinic visit. CADASIL stands for cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy. It is a disease of young adults and presents with migraines with or without an aura, mood disturbances, focal neuralgic deficits, strokes, and dementia. It is a condition that leaves you facing migraines in your twenties, mini-strokes in your thirties, and then death by your forties. I want a second opinion. I need a second opinion. This can't be me, my life!
Josh packs the car and drives us to Mayo Clinic. We leave early on Saturday morning and arrive late on Sunday night. We arrive as walk-ins. The drive is long and painful, but we figure that I have nothing to lose.
It's Monday 7:30 am, Minnesota time. We decide that we will wait as long as it takes to be seen, be it a week or a month. It doesn't matter, because I am not getting better in Michigan. I have had tons of tests done in the past seven weeks—MRI, sinus CT, two spinal taps, and a battery of blood and urine tests. I have tried several migraine medications; nothing works.
At Mayo Clinic, the only conflict that we have is my husband's work schedule. He arranges for a week off, something that is difficult to do when you have classes and students who depend on you. I think to myself, If I don't get seen this week, I am in trouble.
I am unable to read, write, or follow directions by myself. This mysterious illness forces me to be needy. I need my husband here with me. I—Ms. Independent World Traveler—can't even find my way around Mayo Clinic or read my testing instructions. He fills out my medical forms for me. I need help with everything these days: taking a shower, brushing my teeth, getting dressed, and blow-drying my hair.
As we wait in the waiting room, I silently pray to myself, "Please, God and the universe, just let me be seen. I need answers as to what is going on with my body. Please, call my name next."
"Ms. Chantal Hoey-Sanders?"
Did I hear that correctly? We've only been here for an hour and a half. It's not supposed to work like this. Oh, God, I must really be sick! That tiny blue slip of paper that we filled out listed my top three symptoms, I think. I must really have something rare.
Thank you, MESSA health insurance, God, and the universe, I silently say to myself as my name is announced through a microphone.
I am among two hundred or so other people in this room. We all sit here, in pain and in silence. The room reminds me more of a fancy bank than a hospital, with mahogany furniture from the late 1980s and shiny gray marble-tiled floors. The other patients all stare at me. I am the youngest in the room. I am the only one wearing sunglasses. I proceed to the counter.
Everyone at Mayo Clinic is very kind. They hand me a printout five pages long with times, locations, and test assignments on it. I can't read it. My husband reads it for me. He is my coordinator, my coach, my lifeline. I am thankful for him. I haven't always been thankful, I realize, and he hasn't always been like this with me either. In the beginning, the first month of my illness and inability to work, he—like countless others—thought that I was faking. He thought that this was some sort of a mental funk of mine to avoid going to work. I knew it wasn't.
This caused great tension in our fairly new marriage. We had been married only a year when I became ill. It wasn't until that morning—as I cried uncontrollably, when my husband saw that the left side of my face had slid and was sagging—that he finally believed me.
I have known all along that something was very wrong with me, with my whole being. I didn't need to look into the mirror and see my face to understand.
I go to Mayo Clinic twice. My initial trip is in October and Josh is by my side. The following month, I return to Mayo with the help of my caring mother-in-law for more extensive testing and MRIs with contrast dyes. Everyone at Mayo is very kind, and I am overwhelmed—in a good way—with their kindness. It is such an organized and well-run institution. It impresses me and I am hopeful.
But every day, this headache is getting worse. They say it is not CADASIL. Thank you, God and the universe! They conclude that it is classic migraine with prolonged aura, a condition that could lead into a stroke. I am to avoid caffeine, certain foods, to take one baby aspirin per day, and to follow the same rigid daily schedule.
I change my diet and I follow their guidance. "Make sure that you get at least eight hours of sleep per night," my doctor advises. Yeah, right, I say to myself, I don't sleep. My brain doesn't allow it and hasn't for the past twenty years. They give me the anti-depressant Trazadone for sleep and a laundry list of medications to try for the migraine. I diligently try each of these approaches over the next few months at home. None of them works.
My medical chart from Mayo Clinic reads as follows: severe migraine headaches with prolonged aura, polycystic ovaries, insulin resistance, and possible mood disorder. "Depression" is what they mean by mood disorder, I think, even though I have passed all my psychiatric evaluations with flying colors. This is not their final diagnosis; we are still waiting for more diagnostic tests to be taken and more samples to be returned before they draw any final conclusions.
Understanding the Cause without Self-blame
It is now January. I am home alone in Michigan and have been here for the past five months. I have been sick since September and I am still in communication with the Mayo Clinic. As a follow-up they send biweekly urine and blood test "kits" to me. I take them to my local hospital's laboratory and have the samples drawn. My husband very graciously takes them to our local post office where they are returned to the Mayo Clinic for analysis. This continues for the next four months. I still don't have any concrete answers. I am housebound and unable to drive.
I take a medical leave from my job with the hopes of returning. I lose many of my friends. I don't blame them. No one knows how to help me, and rather than try, they avoid me. It is easier for them that way. My phone never rings.
I am forgotten. I am fragile. So many days, I struggle to catch my breath after standing up. It exhausts me. Standing up exhausts me. I need to rest, to lie down flat, just to catch my breath and to replenish my energy. What is wrong with me? I cry and I cry. I miss the life that has been snatched from me. I am stripped, exposed, and angry. I miss teaching and I miss my students. I miss my independence and my mind. I feel reduced, dehumanized, pathetic. I feel like a failure.
This daily struggle between inner strength and outer dishevelment, pain, and fatigue is getting old. I try to rationally make sense of it and nothing comes to me. Nothing. I don't understand. Why me? How did I get here? Could it have been the accident on Labor Day at a local craft retailer that made me like this? Could this be because of the trauma that I received on the back of my head when one of the wooden displays fell and hit me? If that were the case, then why hasn't that shown up on any of my CTs or MRIs? I search my soul and press on with the nagging thought of How did I get here?
I get angry. My frustration fuels me, pushes me on, guides me aimlessly. I know that something is really wrong with my whole being and my body. For a short period of time, I disregard all of the medical journals, and I begin to take a huge look inward at myself. This inner spiritual journey is just about as scary as my medical one, yet I have a strong sense that they are connected and that I need to look inside of myself in order to truly become well. I need to figure out this disease. I am new to all of this, yet I am determined that I am going to figure this out if it's the last thing I ever do. My goal is simply to get to the bottom of this mysterious illness so I can find my cure.
Since I can't read, I call our local library and I order self-help books on CD and listen to them daily. Caroline Myss, John Kabbott-Zinn, and Louise Hay all become my steady companions. Their self-help tapes inspire me and help me to understand that all of my suffering may not be for naught.
For the first time in months, I feel that my struggle is going to help others. In fact, I sense through the center of my being that my struggle and my story are going to save others from the grief that I am experiencing right now. It's going to give them hope and help them. I'm not sure exactly how it will do this, but something deep down inside me knows it will.
I firmly believe that we go through good and bad experiences in life for a reason. The reason may not be known to us at the time, but it is there. I believe that we are here on Earth to live, to learn, to love, and to help each other. To me, there are no coincidences in life. When we know better, we do better. I also stand firm behind the power of positive affirmations and in creating your own hopeful and healthy destiny even when it looks grim. I did not ask to be sick. This is not the life that I had planned for myself, and although I have asked myself many times how I got here, I know that I am not to blame. I am not the cause of my situation. I accept this now and say good-bye to my old life.
I have believed from the start of this illness, from the time when the doctors made their final diagnosis (no matter the diagnosis) that I will get well. I hold that power to get well. But first the doctors have to figure out what is going on with my body.
I try thirty different medications for my migraines, including some anti-seizure drugs and some anti-depressants; nothing works. I look normal on the outside, despite the fact that my body is screaming in pain. I always wear my sunglasses and a large-brimmed hat, even inside buildings. This illness is invisible, but I am not.
I am alone. My days drag on, as do my nights; I don't sleep. HSN, QVC, and my cats are now my only friends. I close my eyes in between commercials as the flashing lights from them are too blinding and painful for me to watch—small daggers piercing through my eyes. I no longer want morning to come. I even have the fleeting thoughts of praying for death, although this isn't truly what I want.
I want to become well.
Saying Goodbye to the Old Life
Everything in my life is a struggle. In my world, the minutes feel like days, the days feel like months. I can't stand lying on this futon mattress on the floor any longer. Enough is enough. Something has to change. I search for the phone book. I force myself to read. I order myself a king-sized bed, mattress pad, and sheets. I pay for them by credit card, and I have them all delivered to our house. It's amazing how quickly beds can be delivered!
My husband arrives home to find a note posted on our downstairs den door: "Josh, I have a big surprise for you. I hope that you like it. Je veux etre avec toi ce soir. Soyez heureux!" (I want to be with you tonight, that is, in the same bed! Be happy.)
Excerpted from I Have Fibromyalgia / Chronic Fatigue Syndrome, but it Doesn't Have Me! A Memoir by Chantal K. Hoey-Sanders Copyright © 2011 by Chantal K. Hoey-Sanders. Excerpted by permission of Balboa Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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