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Chronic Fatigue SyndromeBy: Gurli Bagnall 1991, was the year in which I turned 56 and in which I was diagnosed with the Chronic Fatigue Syndrome. It was triggered by many years of inappropriate medical treatment - that is, prescribed drugs. When the specialist rang to say that there was nothing untoward in the routine test results, he also delivered his diagnosis. “You have the Chronic Fatigue Syndrome,” he said. “You’ll just have to learn to live with it.” I had never heard of the CFS and he didn’t bother explain. Indeed, as soon as the words were out of his mouth, he said a hasty goodbye and disconnected the call. From there on, I became part of that army of sufferers who have had to battle the system for the very right to exist. Isn’t it ironic that those who fight so hard to survive are routinely diagnosed as depressed? Heaven knows, those who suffer MCS/CFS/ME, are typically subjected to medical prejudices, but when the medical profession itself is responsible for the condition, sympathy, as one army surgeon said to a badly wounded soldier, is something you’ll only find in the dictionary - somewhere between shit and syphilis. In the early stages when I had little knowledge of what I was dealing with, I would drag myself off to the doctor to describe various distressing symptoms which I now know were reactions to things I hadn’t identified. I had never before suffered allergies or multi-chemical sensitivities, and at that stage, it didn’t occur to me that that such problems had arisen. The doctor (and the second, third and fourth), as he listened to my brief answers about my medical history, became cold, distant - sometimes even antagonistic - and treated me like a psych case. In the interests of survival, I embarked upon a research program as so many had done before me. One of the first accounts I read of the disease, was Toni Jeffreys’ book, “The Mile High Stair Case”. It scared the living daylights out of me. At the same time, I took comfort in the new-found knowledge that I was not alone in this. For two years, I pushed myself to provide voluntary counseling for people who had been damaged by the same drugs that had triggered my illness. Finally I was physically unable to continue but somehow the demands were still there. The telephone calls kept coming and letters still needed writing. I was the shoulder to cry on but there was no shoulder for me. By 1994, I was almost entirely house-bound and frequently, bed bound, except for the odd slow shuffle to the bathroom and kitchen. I made a request for home help and, surprisingly, it was granted. All the pollutants associated with a city, were having their effect and in 1997, I felt that if I didn’t move to a smaller community, I would die. In June of that year, I took up residence in a small village of about 500 people. I purchased an old house and endured the frustration of watching workmen do a bit of this and that on one day, and a week later come back to do a bit more of this and that. In the meantime, I lived for weeks in a disorganized mess. If I had been well, I could have done most of the tasks myself. Despite these frustrations, I was filled with optimism and hope and foolishly drove myself to get my house in order and, of course, I suffered the consequences. It was not initially apparent, but I was to discover that I had a serious problem in this little town. The only doctor here, doesn’t believe that MCS/ME/CFS is a physical condition. He certainly never had the time or desire to listen to anything I had to say, and when I told him that the cardiac arrhythmia (which I had suffered in short spells ever since the onset of the disease), was now there quite frequently and for hours on end, he angrily told me that it was nothing more than anxiety and palpitations. “You need to exercise!” he shouted. By the time the arrhythmia had become a permanent fixture, I felt that he posed a greater risk to my health than the condition itself. One year later, when I finally managed to get a referral to a cardiologist in the nearest city, the condition was diagnosed as atrial fibrillation. This was another problem, because I couldn’t tolerate any of the drugs prescribed. One doctor I saw, was all set to have me undergo a double-blind trial on Digoxin and a placebo to prove just how “powerful that thing, the mind” is. The establishment was determined to force me to “make an effort to help myself”, so as I got progressively sicker, so my home help was reduced until I had to fund it myself out of my meager income. I always felt as if I was poisoned and I believed that the heart problems were a reaction to that. After a long time, I began to associate the worst periods with my bedroom. It was a vicious circle. The sicker I was, the more time I had to spend on my bed. Could it be the cupboards that are build of compressed? board and maybe not sealed properly? Or perhaps... Finally, with the help of her son, Vicki, who is my right hand, brought my bed into the living area and transferred the lounge suite into the bedroom. From thereon, things started to look up. When you are reacting to a lot of things, it becomes very hard to definitely identify them but as I felt a little better, I was able to do that and quite quickly. I put a dust mite proof cover on my mattress, and dispensed with the foam pad on top of the mattress. I wore a mask when I read the newspaper or magazines and didn’t keep them in the room unless they were in plastic bags. I put my washing through three extra rinses and I was more careful about rotating the brands of toilet soaps. I found that the small heat transfer/extractor fan positioned in the wall between the living room and bedroom, sucks out a build up of nasties in the living room and blows them into the bedroom. This stops coughing within ten minutes. For once I am grateful for the chemical sensitivity which stopped me using any one of the drugs which the doctors wanted me to take for the cardiac arrhythmia, because I would have had no proof that it was the “cleaning up” of my environment that has brought about a dramatic improvement. The sad part is, the doctors don’t want to know about that. At this time, my optimism is once again at a high (ish) level and I am thankful to have got through 1997 to 1999 in one piece. |
