My MCS Story
Part 2
One day it happened. All the little dominoes that had been carefully lined up for years were tripped in an instant. This was a problem so new, so different, that it never occurred to me that it was my same old problem wearing a new disguise. I had been enjoying a period of optimum health, particularly for me. So much so that we had made a two-week trip to New York with little consequence. That being the case, I thought it was a good time to get some projects done around the house. Using a gas mask, I did some faux-painting with the usual latex-based paints, but I also had a project I wanted done with an oil-based paint.
Whew! The odor was so strong, we decided that we should get out of the house for a while once it was done. So the next weekend I painted quickly, with our bags all packed, and we went to visit family for the weekend.
When we returned, the chemical smell in the house was still terribly strong. I was feeling very sick that evening upon returning home, but it wasn't too bad in our bedroom at the far end of the house. The next evening, I was standing in the painted room discussing something with my husband when I suddenly felt so ill and strange that all I could say was, "Take me to the hospital."
We had not even left the driveway when my entire body started thrashing back and forth rapidly and vigorously in a manner that seemed to resemble a grand mal seizure. I would thrash for several seconds and then collapse for several seconds, then thrash, then collapse. This continued for most of the forty-five minute drive to the hospital. By the time I arrived, the thrashing had waned to a kind of "jiggling" type of strong tremor. The doctors were perplexed, but found nothing in the routine tests. Finally they told me I was having an anxiety attack and sent me home.
Two days later I had a similar attack and called an ambulance the moment I started feeling it come on. It took the ambulance personnel by surprise when I started thrashing shortly after they arrived. But in the next week they got used to seeing my episodes. By the end of the week, I was having these episodes 3-5 times a day, and I went into the emergency room several times. Once one of the ambulance workers, who was supposed to stay back of the nurse's station, walked in and called out, "Hey, can someone do something for this lady? She can't go on like this day after day." Still, the tests were normal, and the doctors kept telling me that I was having anxiety attacks.
Anti-convulsant drugs were tried. One made the seizure-like episodes milder, but none stopped them. All made me feel so ill that I couldn't function. I did not know why they made me feel so ill until my blood pressure checked in at 80/35 while I was on one of the drugs. It was obvious that they were not the solution. When medicines failed to help, the doctors told me to quit coming in as there was nothing they could do. In a desperate tone, I asked one doctor what I was to do, and he replied, "You haven't died yet. It can't be too bad."
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Unbelievably, we had not really made the connection between the chemicals in our home and these new problems. We knew I was affected by them and so I tried to stay in the part of the house that had not been touched, but we really thought this was a new problem in addition to the chemical allergies, rather than a change in the old problem. We continued trying new doctors until we had exhausted most of the hospitals in the city. I was getting worse. I felt desperate and was frantic at times.
The "seizure-like episodes" had been occurring 3-5 times daily for over two months, lasting anywhere from 20-90 minutes each. They were not considered "true seizures" because the brain waves were not interrupted and I was conscious throughout. I generally could not speak from the time they started until they would let up, but I could hear and recount everything that happened. Each occurrence was preceded by a horrible feeling running down my arms and legs, similar to the feeling one gets with an electrical shock. Severe attacks were usually accompanied by diarrhea. Between the attacks themselves and continued dehydration from the diarrhea, I was becoming so weak I was rarely out of bed. On really bad days, just sitting upright in bed would bring on seizures.
At this point chiropractic care was helping me to experience relief more than anything else, and though it didn't prevent the attacks, they were often cut short by chiropractic intervention. I was seeing the chiropractor almost daily for quite a while. He was invaluable to me, and made my life tolerable to a great extent, seeing me at a moment's notice, often after 11:00 PM. I cannot thank him enough for being there for me whenever I needed help. It was truly above and beyond the call of duty.
While he recognized that getting pressure off the brain stem helped to alleviate my symptoms, he felt that it was more than a chiropractic issue. Then we heard about a naturopathic doctor 12 hours away who had helped a friend with chemical sensitivities and other problems.
What an education began for me! With every visit I was amazed to learn about this wonderful body we all possess and how intricately it works to combat all the abuses we heap upon it! I have always been convinced that a wise and loving Creator designed us and put us here, but I now have more appreciation for him than ever!
It has been four years since I began to get real help. I improved a great deal the first year, and I continue to improve. I actually experience times in my immune cycle, when I seem to have a greater level of tolerance to chemicals, though I still cannot tolerate chemicals overall. I still have seizures when I cannot avoid chemicals, but they rarely last more than a minute or two and are extremely mild compared to what I once had. When I stay away from chemical exposures and keep a sane pace, I feel better than I ever have.
It is a challenge to take full advantage of my increased level of health since I am so limited in where I can go. I can't frequent theaters, shopping malls, and restaurants like most people, but I'm finding I can do quite well without them. Like Anne Shirley says, it's not what the world holds for you, it's what you bring to it. So here's a little part of what I am trying bring to it--a sharing of my thoughts and experiences concerning MCS. I hope you enjoy it.
© Dorothy Herrmann 2004
