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The Dreaded Salicylate
Up until 27 years of age I had lived a life in relative good health. Leaving Sweden at 21 to go, on a migrant ship (yes, they did exist in 1971), to live in Australia. However, plans are made to be changed, and four weeks after arriving in Sydney, I was on a yacht, with 15 other people, heading off to different islands in the Pacific for five months. From there I continued travelling all over the world, never having problems with my health, not even an upset stomach! Years later I returned to Australia. Got married at 26 to a Canadian, went to Canada for 11 months and later went back and settled in Australia. I got pregnant a year later and my well being went downhill from there. I became extremely fatigued, pretty much from the onset and had to sleep a lot. My brain disfunction was quite severe. The trigger in the brain to initiate action had all but disappeared, usual thought process was absent, and quite erratic thoughts took over. Needless to say, it was a very scary time as I thought I was going, quietly but surely, in sane. The problems continued after the birth, although not at a constant severity. My sense of well being was more like a rollercoaster, up and down, for no apparent reason as far as I could see, nor, dare I say, the medical profession. I had my second child 23 months later and didn't feel as bad as the first time, which was very lucky, as my first born was a very busy boy. Years went by in the same vain. I went to our family doctor who told me he didn't consider me a "neurotic housewife" (that was very generous of him) and prescribed vitamins. As they didn't improve my situation, a suggestion of a slight depression was thrown in the ring. I convinced him that I did not suffer from depression, although heaven knows I had a reason to, but felt the problem was physical. Even a good friend of mine tried to hint at depression. I had the usual blood test to see if I had an iron deficiency etc. My doctor suggested more vitamins but there was no improvement. I was very concerned every time my brain became disfunctional and my poor children, having a mother who, at times, seemed rather dead from the neck up and was tired a lot of the time. Very boring! There had to be something wrong and it needed to be investigated! I had had enough of our family doctor and his, at times, rather patronizing way in dealing with me (if clueless, attack and blame the patient I say!). Therefore I insisted that he refer me to someone who would consider my health problem serious enough to be investigated. He referred me to an endocrinologist, to whom I am forever grateful for taking me seriously, and she immediately admitted me to Royal Prince Alfred hospital for tests. They tested everything, and, in a rather apologetic way, asked me if I minded talking to their psychiatrist. Not only was I open to the idea, I welcomed it. I was willing to talk to anyone and do anything. However, they couldn't find anything wrong, physically or psychologically (I was as nutty as the next person). Although my brainwaves seemed a bit out of the ordinary, the neurologist didn't think it was anything to pursue. I went to an ear, nose and throat specialist. Another of my symptoms is sinusitis, with my sinus overflowing down the back of my throat, often causing me headaches (migraines at times). The specialist told me he had a lot of people with exactly the same problems as I had (he listed them) and they had been helped with a certain nose spray. I asked him, incredulously, could that really be true? He assured me it was, gave me a prescription and on my way down the flights of stairs from 3rd floor to ground level, I shrieked and cheered with happiness, the sound echoing through the building. However, it was too good to be true. I should have gone back and told him to be much more careful in what he promises people. Maybe that was why he thought it was a successful treatment, nobody told him otherwise! I was devastated. Many months later I called the endocrinologist to get a record of the test results, needed for visits to a Homeopath and a Naturopath I was seeing. She told me she had planned to call me as she had just come back from a conference about allergies, and all my symptoms came up! I was immediately sent to see Anne Swain at the Allergy Clinic at RPA hospital. I was one step closer to get an answer to my health problems! Anne Swain put me on the elimination diet (Feingold) and after only a week, I felt like a new person! I had forgot what is was like feeling normal. I could hardly sit still, why waste time because, who knew how long it would last! Unfortunately it did not last that long. I was given 14 common chemicals, 4 of which were placebos, found in foods (naturally or otherwise), unknown to me, to test. I got very sick after taking, what we found out later to be, salicylate, and it took a long time for me to recover and be able to continue testing the rest of the chemicals. Sodium Nitrate, often found in delicatessen meat, also affected me but to a much lesser extent. At last we knew what the problem was! How good it was to talk to someone who understood, especially Anne Swain, who is a lovely person to boot. I remember when I first went to see Anne, there were only a couple of people in the waiting room, who were going to be tested. The next time I had to go there, the room was full! Instead of individually explaining the necessary changes to our diets and our lives, to save time, Anne had gathered as many as she could fit in the room, to go through the salicylate food list. A lot of sighs and unhappy utterances were heard around that room, when the contents of that dreaded list became a reality. Food is such an important aspect of our lives! I was told that in about 10 years time there may be something available that could help this problem. Already, I was looking 10 years ahead with great anticipation! This was in the mid eighties and the salicylate list wasn't as detailed as the one available now. I have been going on trial and error a bit, as I was told to try and keep the salicylate intake as high as possible. This is quite complicated as it is difficult to control everything you ingest, as well as the environment. This is a continuous struggle for me. Going through menopause doesn't help any. Yet again I am at a point where life is unbearable, which has forced me to realise that the only alternative is to restrict my diet further. It won't be as severe as the Feingold diet, as I am afraid I could become too sensitive. I will also have to be more aware and careful of my environment. I have long lost any expectations for a "normal" level of well being. If I hadn't, I think I would have drowned in my feelings of defeat. However, I do get an amazing rage from time to time, where I am consumed with determination to succeed, but it always ends in "failure". It could be due to that I live on the "edge" of salicylate overload, which then doesn't leave any room for mishaps. I don't like to deprive myself too much of a "healthy" diet as that may bring on other health problems. It is a very difficult balance. I did go back to the RPA hospital ten years later (it could have been to the day!), with great anticipation. I talked to another dietition (Anne Swain was on leave) who told me that unfortunately there was no magic potion. She had to repeat it many times. Instead I got a "friendly foods" cook book (I am not a cook enthusiast at the best of times). It was an hour and half drive to the hospital and I cried all the way home. Even the windshield cleaner, working at a traffic light intersection, didn't have the nerve to come near my car! Don't mess with a distraught woman! The last 2 weeks I have been as sick as I get. I have no doubt that the painting I did brought me over the edge of tolerance. The fog is finally lifting and energy is coming back. How could I be so careless you may ask (or have you gone to sleep by now?). I painted our upstairs hallway, which is wide open, down to the main floor, and cant be closed off. I had painted two other rooms previously and didn't have a problem, as they could be closed off and aired out until all smell had dissipated. Maybe I just thought I would be able to handle it. I could kick myself for being so careless. I would love to know how other people with this problem handle their lives. Sometimes, and I know this will sound really absurd to some people, I wish I had an obvious physical disability, so that people could understand more readily why my situation is a bit different to theirs. No explanations necessary, no feelings of being on the outside looking in, no feelings of wasting your life away, no feelings of the dreaded self pity. I must add here that I don't spend much time on negative thoughts, but sometimes it is becomes too much. When you have a problem like this, it is even more apparent how important food is in almost every social aspect of our society. I often bring my own food when going to someone's place for dinner, especially someone new. It is an unnecessary burden/bother for the host/hostess, and instead of being a happy get together, it becomes a chore. Sometimes I wish we didn't have to eat at all! I have also been diagnosed with Occular Roseacea, which makes my eyes a constant irritant, even painful at time. It plays havoc with my eyesight making it difficult for me to focus for too long. There is no cure for this, except antibiotics, which give a bit of a relief. Restricting my diet may help. There is always that hope. My two grown up children, husband, our dog and two cats and I (did you notice how I put my husband before my animals?), moved to Canada about 3 years ago. A rather stressful move, which doesn't help either, and no Anne Swain! What amazes me, after all these years, is how I still haven't found a medical doctor, at least not where I live in Canada, who is familiar with salicylate intolerance, let alone someone who takes it seriously. Anyway, as I said, I wonder how other people with salicylate intolerance cope. Do they have it under control at all times? If so, how do they do that? Do they feel sorry for themselves at times, or is it just me being a wimp? I think not! |