I WAS A DOCTOR’S WIFE, with three children in elementary school, when I first noticed a burning sensation across the back of my shoulders and neck. I didn’t wake up with it. But as the day progressed, it would build up gradually until it became very distracting. It wasn’t bad enough for me to make a doctor’s appointment. Also I had inherited depression, migraines, and a sleep disorder. I just figured the burning was related to my migraines. In addition I had been experiencing irritable bowel (IBS), urinary frequency, and fatigue, with increasing regularity.
As a child I had noticed that I was a little different from the other kids. I complained often of bone pains. My parents said they were just “growing pains“. I couldn’t do things that required my arms to be raised over my head, like changing a light bulb, without immediate pain and fatigue. Having a fan or air conditioner blow on me was intolerable. Later in life I would find it hard to allow air to touch my skin. My eyes were too sensitive to sunlight. While other kids were looking around them on a sunny day, I would be looking down at the ground. On humid days I wilted, barely able to walk home from the school bus. Throughout school I made straight A’s except for Physical Education. I got F’s. For a “tomboy” I was unable to do the usual physical activities of childhood. By late adolescence my parents were concerned enough to take me to a doctor. At the time, there were no anti-depressants. After a quick examination, the doctor announced that I was fine, physically. My parents took that to mean that it was all in my head.
Still, I was smart, curious, and determined to have a full and exciting life. I attended several universities, traveled to many far-away cities to attend conferences, and we took our children to many exciting vacation destinations. Looking back, I am astonished and confused at how I was able to fit so many activities and fun into those few years in spite of my condition.
By then, I had developed much more than unusual sensitivities. I had allergies for both indoor and outdoor allergens for all four seasons. Over the years my flu-like pain had steadily increased to so much discomfort that I was searching constantly for anything that could touch it. The new NSAIDS were coming out and I tried them all with no relief. Tylenol III and Darvon weren’t any help. I had developed all the tender points that frequently triggered additional pains over other regions of my body. I was in constant intolerable pain with no end in sight and no help wherever I looked.
Eventually a few articles appeared in my husband’s medical journals. But that blessed glimmer of hope was soon quashed by conflicting reports, disinterest within the medical community, and lack of funds for research. I would have to submit myself to many doctors and specialists for many years while I waited hopelessly for an answer and some help. After years of public controversy, some research was completed; after a publicity campaign, three doctors diagnosed me with Fibromyalgia.
I was trying to work full-time at my husband’s office. The air conditioning was intolerable. The busy pace was exhausting. The constant changes were over-whelming. My days required an inordinate amount of effort. As a working mother of three teen-agers and no help at home, I found my problems insurmountable.
But the worst symptom was just beginning to show its tenacity. It was called “fibro-fog”. My concentration, focus, and memory were all affected. It was embarrassing and humiliating to forget names and faces, to overlook deadlines, to neglect details, to fail to initiate the more demanding tasks that were my responsibility, and to be oblivious to the serious consequences. Where once I had been capable, now I was intimidated. These deficiencies I could not hide. The employees looked at me with pity. Each day began with ominous feelings of foreboding and fear. Each task became more daunting. I was soon fired.
Finally, I lost my driver’s license because of my medication; I no longer drove. With my muddled thinking, I could no longer work. I had been an avid reader all of my life but now I had difficulty reading anything more demanding than a recipe. My hypersensitivity made all forms of travel punishing. My skeletal-muscular vulnerability greatly curtailed my hobbies and interests; and neurological susceptibility halted most activities while interrupting rest, sleep, and relaxation.
The loss of activities culminated in weight gain, diabetes, losses in bone density, enlarged heart, high blood-pressure, atherosclerosis, and mini-strokes (TIAs). My sensitivities grew to include auto-immune disorders and inherited susceptibilities including Sjogrens, arthritis, and repetitive injuries including TMJ and carpal tunnel.
I had been doubted, ignored, dismissed, questioned, disbelieved, refused, medically investigated and accused of deceitful and drug-seeking behavior. Losing one’s health and reputation inevitably leaves one with very low self-esteem, low expectations, loss of hope, strained relationships, feelings of shame, embarrassment and isolation…and grieving for the loss of one’s life. ~l.o.v.