Late November I was well, fit, strong, and working out regularly. I was enjoying three years of respite from the fibromyalgia that had been my nemesis for over 20 years. But one day, I walked to my bedroom door and innocently, trustingly, opened it. I caught my breath. He is here. I could feel it. The vampire with the Antonio Banderas personage, who sucks the life out of me, is here. Languidly sitting on my small couch, his long legs are casually crossed. His graceful arm stretches across the back of the stuffed pillows making a cozy nest ready for me to fill. His hair falls long, too long, just long enough for me. Head tilted, slightly resting on his hand, he is so still, too still. His dark eyes say it all, and the sly smile is his disguise hiding a sinister intent. Armand, my fibromyalgia, was back.
Okay, it wasn’t as romantic as all that. There never was any romance between me and this syndrome of pain and fatigue. In this essay, I will describe for you, a civilian to fibromyalgia, an example of the emotional struggle between acceptance and denial that I lived through. For you who are my brethren-in-pain, I will explain how I look at fibromyalgia differently now that it has returned to me after a three year interlude of perfect health. Previously, I had a different attitude about my fibromyalgia, I couldn’t bring myself to call it mine. The fibromyalgia, not my fibromyalgia. I distanced myself from it. I was rude to fibromyalgia. I had decided that I would not give it the “respect” it was beating my body up for. When I was suffering, I would label it as stupid-fibro. I refused to own it. It might “have” me, but I did not welcome its advances. Did this tough-love approach help me? Not a bit, it was there, all of the time, this stupid-fibro.
My style of fibromyalgia collapse was dramatic and all-encompassing. I would sink rapidly into exhaustion, more quickly than would be manageable. My whole body would be racked with pain. Any movement, even attempting to make a fist with my hand, was too painful to accomplish. I was not mobile, I lay where I would land. My muscles and joints ached; I couldn’t turn myself over. Any small adjustment was extremely labored. At my worst, I could not lift my hand off of the bed or couch. Laying still was very painful! My ribs would be screaming; my hips would be throbbing. I could feel the connective tissue throughout my body, inflamed and enraged. My voice would go away; I certainly didn’t have the energy to speak, even if I could.
Collapses would visit me for three or four days. I would have only two or three days in between them for recovery. As far as I was concerned, that schedule was basically filling my dance card. A good day for me would be to literally drag myself to the bathroom from the bed to brush my teeth. I would take a long time, with many rest stops spent on the floor. I would then reverse the trek and that would use up any energy I might have stored for that day. My body would be freezing cold inside, my hands and feet like ice. There were sixty to eighty plus symptoms that would present themselves in me, none of them fun. The most important symptom was missing: death. I wouldn’t die. Fibromyalgia would not kill me. I would just linger. I really could not believe there were support groups for this, but there were. I was puzzled how anyone with fibromyalgia could physically get to a support group. I had very few blocks of time where I could pull myself together to leave the house. If I had gone, I wouldn’t be able to recuperate in time for another weekly meeting. Forget it.
After a few years, the stars aligned, and I somehow showed up at a support group meeting at my big-box Baptist church. The meeting was called The Chronic Disease Group. I chose it because of the convenience. I was living, temporarily, next door to the church. We had sold our ranch house in horse country to build our southern antebellum dream home with a stables on 51 acres in a pastoral setting. While everything was being built, we were living with our daughters in a mobile home on the acreage, facing the 10 acre pond. Our dogs were with us and our horses were living in paddocks in the front yard. We were having a grand family experience becoming familiar with the squirrels, deer and beavers. After three months in the trailer my hair was falling out and my nails were splitting. My fibromyalgia was worse than ever. My rheumatologist determined that all of the warning signs posted on the interior walls, the door handles and faucets in the trailer were directed towards me. The notices on the walls warned of the formaldehyde that was used in the creation of the materials used to build the trailer. Because of the fibromyalgia, I was extremely sensitive to the formaldehyde hazard, and my doctor advised that I needed to move out immediately for the duration of our building project.
We relocated to a small townhouse at the senior community where my mother lived. Being an extension of the church we belonged to, they were gracious enough to allow us to live there for a few months. Here I was, married, raising three children and homeschooling two of them because I couldn’t drive them to school and back amidst all of my symptoms. We had four dogs, many horses and traveled the horseshow circuit most of the year. I was also my husband’s assistant and secretary for his business. I was an overseer of our building project and chief design consultant. Being all that I could be was making me desperate. Constant suffering creates desperation. Even though the support group meeting was not specifically labeled for fibromyalgia, I had decided that whatever they would talk about that night might apply to my situation. I found myself physically mobile that night, so the short ride of a few minutes duration was workable. I hoped. I could never really rely on my physical self.
Arriving at the door of the support group, I was nervous and scared. I felt that I should be ashamed to show up at this meeting with an invisible, unexplainable syndrome of pain and exhaustion. These people were seriously ill, otherwise they wouldn’t be in there. Also, fibromyalgia had an ironic anti-symptom – I didn’t look sick. I had a poised and polished exterior, but inside I was full of physical pain. If you saw me in 3D, real-time, anywhere, I was healthy and well that day. But if I was out of your sight, don’t count on it, I couldn’t. You would be safe to bet that if I wasn’t around, nowhere to be seen, I was in a collapse. During my collapses, I looked like death barely warmed over. But the few days that I had off from my “dark nights”, I looked great! I could glow. A frequent comment to me was, “gee, you don’t look sick!” I am not alone, that is a comment made to all sufferers of fibromyalgia. I am surprised that there have not been a string of assaults by victims of fibromyalgia on those handing us this “compliment”: it gets very old.
Feeling like an impostor, I entered the room and took a seat in a circle of a dozen people. All were women except for one man. Just as I thought, they all had the same look on their face, there were miserably ill. These were very sick people. One by one they went around the circle introducing themselves and sharing what their chronic condition was. By the time they got to me, I had become so stunned, I felt as if I had quit breathing soon after the introductions had begun. As soon as I attempted to state my name I fell apart sobbing. I am not a crier, what was happening to me? It was all too much. After stating my name I then had to say the same phrase that each one of them had said, “…and I have fibromyalgia.” The man in the group, looked completely defeated and emasculated. A smaller percentage of sufferers are men, but they were well represented that night.
The whole support group experience was too traumatic for me, I did not go back. It made me see myself, as in a mirror, in those sad, pained, exhausted souls. It made me face how truly horrible all this suffering is. Looking at them was like seeing the insides of myself. It was hard enough to live through it each day, by myself, without others to gain reference from. That night, looking at fibromyalgia sitting right in front of me, looking into my eyes, was very profound. As serious as I knew this predicament to be, facing this pitiful quality of life made it become even more so. I felt like my head was spinning, the experience was surreal. I was in a state of shock for days. My usual glib self, my dark humored jokes, my coping mechanisms disappeared for a while.
As the years went by, the collapses eased up in severity but not in frequency. I had a three story house and I couldn’t make it up the first flight of stairs. I had three daughters living up there! I might make it up to the second floor every three months. After eighteen years of fibromyalgia, one morning I popped out of bed. Someone with fibromyalgia doesn’t pop out of anything! Normally, I would ease myself out of bed minus the “ease”. Stiff all over, I would not be able to put my feet flat on the floor. My first steps would be small and cobbled. I couldn’t stand up straight, I would be bent over, like someone in their nineties. But this morning I popped out of bed, landed on my feet, and walked upright. That got my attention! I knew at that moment, it was gone! My body walked automatically, I strode out of my bedroom free of pain. What an amazing feeling to have zero pain! Wow, how much pain had I been in? The pain had been more intense than I had realized. I had forgotten what truly pain-free living felt like. It was gone! Was this the new normal? The fibromyalgia had disappeared, and it stayed away for three years.
Why? Why, why? I don’t know. But I was free of fibromyalgia and I was sure that I was going to stay that way. I hit the ground running. I was able to work out at a level that I aspired to. I started a running program and fell in love with it. I became very active and I didn’t take a moment of it for granted; I discovered endorphins! My mood was very stable and I felt I could now start tapering off of the anti-depressants that had been prescribed for me many years ago. My doctors were treating a chronic depression that I had fallen victim to as a young child. With my doctor’s advice I was able to wean myself down to a very small dose of anti-depressant. But there was something important to keep in mind that I overlooked, fibromyalgia is also treated with anti-depressants. Very small doses are taken at night which enable the sufferer to have deep sleep. This is the stage of sleep that is missing when you have fibromyalgia. In deep sleep your body is paralyzed and recovers from the physical activities of the day. Without deep sleep there is no muscle recovery, so the stress, strain and fatigue is carried over to the following day, amping up the level of pain with no relief. Depression was not being an issue for me anymore, I was ready to stop the anti-depressant completely, and I did. I had forgotten that my anti-depressant was also treating my fibromyalgia.
I had made a change in my workout habits, I switched from running to an intense personal training environment with one-on-one sessions. My sessions were a gift from my daughter for me to train with her trainer. He specialized in professional basketball and football players and clients like my daughter, who is an amazon goddess of fitness. I knew I was being pushed far beyond the point that I had been pushed before. I love intensity, and I have paid the price with collapses many times before. My trainer was confident that I could work at this level despite my hesitancy, my age, my asking for some slack and my clever stalling techniques. Couple this with the fact that I had tapered off of the anti-depressant completely by that time, I then felt the presence of my invisible significant other grow stronger. The collapse Armand brought me was very severe and has not relented completely since. I can’t change anything about the pain and fatigue, but I have changed the way that I live with it. I acknowledge the anomaly of fibromyalgia as something familiar; Armand and I have been reunited.
Upon reflection, I have realized that there is one big thing that has disappeared from inside of me while Armand was away, and that is anger. Anger at my illness, and anger at myself for being the host to it. This makes sense, because during the time that I was healthy, I made a lot of personal progress within my own mind. I began to look at the world differently in general. I became more forgiving and forgetting, not only to others but more importantly to myself as well. I don’t harbor any of the old negative feelings toward Armand and his bag of painful, achy tricks either. There is such a sense of familiarity between us. I can call him old friend. Now that I can see his dark brown eyes more clearly, I invite him along as I visit the whirlpool, “Come, dear.” Armand can float along with me as I practice my freestyle stroke in the lap pool, reminding me that I will most likely feel his “caresses” later on. If he insists that I curl up with him on the couch for the rest of the day, unable to move, it will be because he just can’t get enough of me. He loves to engulf me. He has made himself part of me. I am not complaining, because this time, he has revealed himself to be just so damn handsome.