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Kare got sick after pesticide exposure and a bout of glandular fever
Hi, my name's Kare. I have ME/CFS and this is my story:
It was mid 1989 and life was great. I had a secure job and with two incomes, my husband and myself were able to indulge our love of the outdoors….camping, canoeing, swimming and bush walking. Our favourite pastimes were going to one of Brisbane's many restaurants with the kids or heading for the beach. Financially secure, we were building a new home in Brisbane and looking forward to moving in. We were all excited, especially my husband who as a landscape gardener already had plans for our new home. We both loved gardening.
Then things started to change. My life long asthma was getting worse and although I had always led an active life, I began to feel more and more tired. My doctor told me I had a virus and prescribed antibiotics for my "flu like" symptoms. I continued to work (after all I was due for long service leave, which I would use to set up our new home). Despite three courses of antibiotics, the symptoms got worse. I had severe pains in my chest, my eyes were playing up, and I began getting unexplained allergic reactions for which the doctor prescribed a long term course of anti-histamine and prednisone.
November 1989 and our new home was ready. I moved in and crashed! By now I was getting migraine like headaches. My whole body was racked with unexplained pain that kept me awake at night and for which Panadeine was useless. I could barely talk and was now confined to bed. Trying to focus on what people said at times inexplicably wore me out. I was struggling to breathe and sometimes wondered if I would wake the next day ... sometimes I thought it would be a blessing if I didn't. The pain was unrelenting. Day in and day out my nervous system screamed ... never ending. A locum doctor visiting my home suggested I had M.E. but this was never investigated any further.
January 1990 Despite high doses of prednisone and other asthma medication, I was rushed to hospital with uncontrollable asthma and extraordinarily high blood pressure. Confined to hospital for a month, I could barely stay awake long enough to eat. My hair was falling out literally in handfuls covering my pillow. The smell of disinfectant was overwhelming … suffocating. I dreaded the cleaner coming around the ward. The hospital sent a psychiatrist who prescribed Valium and, although I was dizzy, in pain, constantly tired and barely able to walk, put me on an exercise bike where I collapsed, unable to call for help. All I could do was lie there till they took me back to my ward in a wheel chair. The very next day I was told to lift weights and forced to walk up and down the fire escape. Despite the pain and desperate to get well, I did what I was told … the doctors knew best didn't they? I would do anything to get well. On my birthday, 22nd February 1990, still in pain and struggling to breathe I asked to go home.
"The isolation was terrible"
In the following years, sometimes I thought I would beat it only to only to have a cold, bout of the flu or visit to someone's home set me back for months on end. My bedroom became my 'office' from which I ran our home and which thankfully had a bay window through which I could see the world. Everything I ate, everything I touched and everything I did seemed to make me sick. My radio and telephone were my lifelines to the world. I had problems with memory and concentration which, together with the headaches, prevented me from watching TV or having lengthy conversations. I could see my neighbours through the window on the footpath ... only a few metres away but unreachable. The isolation was terrible. With my children at school and my husband at work I spent many, many hours alone, just listening to the radio, sometimes too sick to get out of bed to prepare meals for myself, often going hungry because of it.
Early 1992 I was able to get outside for short periods and took an interest in our garden. I loved the outdoors, and unable to stand properly I dragged a chair around from which I sat and watered the garden. Determined to be chemical free I planned an organic garden and, with my husband to do the heavy work, entered a local garden competition - which we won! But in August 1992 after a severe bout of the flu I was back in bed again. The garden I had worked so hard on died from lack of care, and by the time my trophy arrived I could barely hold it, let alone stand. This time I had vomiting, diarrhoea and a constant sore throat. I had difficulty swallowing. Food that I used to be able to tolerate kept giving me asthma, but what I could tolerate, I nearly choked on! For about three months I lived mostly on broth and bread, and despite visits to the doctor who by this time was convinced I must be anorexic, I couldn't get any help. I lost weight dramatically down to 35kg. Even the hospital didn't seem to be interested in finding out the cause.
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LEFT: Kare in 1992, barely able to hold her gardening trophy BELOW: Kare in 2001
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Thankfully I found a doctor who understood ME/CFS and he put me on a course of vitamin injections ... I really HATE needles but I was desperate and anything that made me better was worth it! He also sent me for allergy tests that showed I had become chemically sensitive to many things including paints, plastics, glues, disinfectants etc along with many foods. Essentially I was "allergic to the 20th century". Tests later showed that I had not only suffered from glandular fever but had been exposed to Aldrin, a chemical that is used to kill termites. It stays in the body tissues and attacks the central nervous system.
November 1992 By this time my husband felt he could no longer handle the stress and moved out, leaving me with a mortgage, extraordinary medical bills and confined to bed with two kids to raise. Getting 'better' required not only expensive injections but a multitude of vitamin supplements and special foods for which there are no concessions or financial assistance, nor pharmaceutical benefits scheme, and none of which I could afford. By this time my lungs had been severely damaged by the constant strain to breathe, and the specialists the CMO sent me to said I had developed emphysema. Often during a severe asthma attack I had to bring my son home from school to care for me. He missed a lot of school.
"I had spent the greater part of six years in bed"
Back then, people with M.E. often didn't qualify for the assistance that many disabled people had access to. Part of the problem was that life goes on. I have never been one to shirk responsibility and I had a family to raise, so no matter how bad I felt or how much pain I was in, I made an effort to make things run smoothly. My daughter got a learner's permit that enabled her to drive to the shops with me as her "teacher" sitting in the front seat like a "stunned mullet". The only other way to pay bills or do shopping was via the phone…I LIVED on the phone! The only other assistance available to me at the time was from a local church group who tried to convert my children to their religion ... an extra concern I did not need at the time! Part of the problem too, was that people saw me up the street for half an hour and didn't realise I might spend a week recovering from that short trip!
1994 Hormone problems that had begun back in 1989 became severe and I had to have a hysterectomy. By this time I felt the only way for me to get well was to get away from chemicals and pollution and the humidity as much as possible, so I packed up, sold my home and moved my family to Alice Springs. I remember spending most of the flight sitting in the plane's toilet trying to avoid the perfume from other passengers, struggling to breathe. By this time, I had spent the greater part of six years in bed.
1997 My local doctor referred me to Alice Springs Hospital pain clinic who prescribed morphine for the unrelenting pain that was dragging me down and keeping me awake at night. This, together with a better environment and dietary changes, enabled my immune system to heal to the extent that I am now able to work part-time and live independently.
Twelve years after first becoming ill, I'm not yet fully recovered, but I live in hope that one day they will find a proper cure/treatment for this dreaded illness.
April 2001
kare@swtch.com.au
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