I have Chronic Fatigue Syndrome (CFS), or as I prefer to call it, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). It is an extremely misunderstood and debilitating illness. I have read that the average time for a person to be ill with CFS is 18 months. I have had it for 18 years more or less. It has cost me a lot to be suffering from this illness and it impacts on my life on a daily basis. Some days are not too bad, while others are extremely terrible.
My journey with CFS began in the aftermath of the Newcastle earthquake of the 28th December 1989. In early 1990, while working at Hawkins Masonic Village repairing roofs damaged by the earthquake (it was raining and many roofs were leaking), I began to feel persistently unwell. I decided to see my doctor who put it down as some sort of stomach bug, most likely Gastroenteritis. After two weeks of medication it was becoming clear that I did not have Gastroenteritis and something more sinister was the cause of my intensifying illness.
Within weeks I had begun to develop all of the debilitating symptoms of CFS and what was worse for me they were all intensifying their effects upon me. What was wrong with me was now something of a mystery, but it was clear I was very ill and getting worse.
When I was younger I had Hyperthyroidism and so the doctor assumed that this was what was wrong with me again, despite the fact that blood tests indicated I no longer had an issue with that disorder. I was placed on medication for Hyperthyroidism and monitored. The medication had no effect on my illness and my patience with ‘witch doctoring’ was running out. I pleaded with my doctor to send me to someone else – a specialist. But who would be useful to see?
A friend had recently been diagnosed with CFS by an Immunologist and eventually I prevailed with my doctor to send me to him. Eventually I was able to set up an appointment and so my time with Doctor Sutherland of the Royal Newcastle Hospital Immunology Department had begun.
By this time I was suffering a myriad array of symptoms, with varying degrees of intensity depending on what week I was asked. Among the most debilitating of these symptoms was a persistent headache that no amount of painkilling or other medication had any impact upon. The headache was like a migraine that wouldn’t go away. It would last for an 18 month stretch this first time, bringing with it an intolerance of bright light, noise, etc. These things caused me immense head pain.
I was also suffering numerous nose bleeds (which I often get when I am very ill), fevers and chills, brain fog (a situation where you seem to know what is going on yet you have an inability to act in a logical manner – some times the sense of knowing what is happening disappears altogether), painful eyes, chronic fatigue in the muscles and extreme soreness, tiredness to the point of sleeping at a drop of a hat (I was sleeping for over 18 hours a day with no relief to my tiredness, headaches, etc), loss of strength in my limbs, constant nausea, inability to think or concentrate, etc.
By this time I was already having time away from work, with being away for weeks at a time being the norm – thankfully they were quite understanding of the fact that I was very ill.
At my lowest point during these first two years I was reduced to being bed-ridden, using a cane for stability when walking and at times was unable to walk. I was sleeping above 18 hours a day with no benefit from it.
During this time of extreme illness I was subjected to innumerable blood tests and other tests, which all revealed little at all as to the cause of my illness. A process of careful elimination under the care of Dr. Sutherland brought the diagnosis of CFS, as well as a psychological evaluation.
There was no cure to be found, with the only helpful advice having come from Dr. Sutherland. He told me to try and rest, then to slowly build myself up again. Walk one block for a week, then two blocks the following week, etc. If I overdid it I would be back in a heap again in no time. I needed to be able to read my own situation to know when I should try to rebuild my life. This advice has helped me through the last 18 years.
I struggled with the illness for 18 months or so and I also struggled with the enigma associated with the illness. That I was sick was not believed by all and this has been a constant stereotype I have been confronted with throughout my illness. I often found myself questioning whether I was sick or whether it was some mental thing. It was a relief when a doctor finally gave me a name for the illness and confirmed I was indeed very ill.
There were times (as there has been since) when I thought that dying would be a better alternative than to be as sick as I was, with no life and the prospect of endless years of severe illness. Suicide was something that popped into my head from time to time, but thankfully it didn’t stay there for long.
At times I found myself not knowing what I was doing, where I had been, etc. At one point I waited behind a parked car, waiting for it to turn the corner only to realise ½ an hour or so later that the car was parked. I found myself having gone shopping with a load of groceries I didn’t need and never had used before. It was like having a form of early onset Dementia.
After about 18 months I began to get better – or so I thought. I was well enough to knock back participation in a trial medication experiment for CFS sufferers which would involve a lengthy stay in hospital and a 50% chance I would receive the placebo. I declined the invitation being concerned I would loose my job as a result of being in hospital for so long.
My health began to improve and I thought I was finally over the illness. During this time I lost contact with Dr. Sutherland who left the hospital because of a dispute with NSW health at the time. Many doctors left the public system at the time.
NEXT: The illness returns