Raising awareness Your Stories Charles's Story I have penned a résumé of my experiences with encephalitis to help those that have recently encountered encephalitis. Fortunately, my encephalitis leaves me with the knowledge that this illness does not have to be totally debilitating or fatal. In my case, the positive medical action resulted in me surviving without any major ongoing problems. The causes of my illness are known but only with the benefit of hindsight as at the time I was taken ill the uncertainty of how I contracted this disease gave my medical team serious concerns. 1981 was varied as being operations director of the largest metal recycling company in the UK and having 25 depots to look after my time was totally committed and I needed to drive over 60,000 miles each year. My circumstances dramatically changed when in November of that year, whilst loading a ship in Cardiff I contracted viral encephalitis. As one of four directors of a company that was in the middle of a management buyout, I realised that the successful loading of any large ship was crucial. My duties included all operation movements and quality control, so I decided to take a hands-on position regarding this important project. I travelled by car to and from Cardiff daily as had been the case six weeks before when I loaded a similar vessel in the same way. I now realize that this was foolish but at that time I was 36 years old, in good health and did not feel that this was in any way risky. My Encephalitis History By midday on the third day, I was concerned about my health. I had a high temperature, ached all over and had a headache. Believing that this was brought on by fatigue, I organized a replacement to supervise the ship loading and my wife arranged an urgent doctor’s appointment. The doctor visited me that afternoon, examined me and told me that I had the flu. He prescribed an extended course of antibiotics and told me that this should resolve the problem within a week or two. Over the next two days, my symptoms became seriously worse such that my temperature rocketed, and I could not tolerate any light, smells or noise. My wife decided to call for a second opinion and asked another doctor, a friend of the family, for a second opinion. This doctor was unclear as to the precise diagnosis but thought that I might have meningitis. As we lived deep in the countryside and time was of the essence, she suggested that my wife immediately drive me to our local hospital as quickly as possible. She rang the hospital to notify them to expect us and explained to them my problems. The Hospital On arrival at the Princess Margaret Hospital in Swindon, I was given exceptional support by the doctors and nurses and admitted into an isolation room. The doctors could not immediately diagnose my problem and as I had been given antibiotics prior to admission, felt that it was unwise to give me any other drugs for the illness other than pain relief. I was prescribed intravenous morphine which was given on demand. The Illness and its diagnosis The reason for such strong pain relief was that I had an excruciating headache and it felt as though my head would burst. I was in and out of consciousness and the doctors organized a lumbar puncture and other medical tests. When the results were known they diagnosed my illness which was not the flu or meningitis but Viral Encephalitis. I couldn’t stand the pressure of sheets on my body, so the hospital staff placed a frame over my body and formed a tunnel. To reduce my temperature, they packed ice around my head and placed a fan by it to blow chilly air over my body. I was fortunate in that during the days that I was unwell we had the coldest weather on record with external temperatures’ of up to 30 degrees below zero. To help the cooling process hospital staff opened my windows with my temperature being controlled by ice and circulating cold external air. I couldn’t stand light, heat, noise or any fragrances such that at one stage of my illness I asked my wife to leave my room because of the smell of her perfume. During my time in the hospital, I was often unconscious and mostly unaware of the seriousness of my illness. The high temperatures caused me to have weird dreams with experiences beyond description all of which seemed at the time not to be dreams but to be real experiences. It’s is hard to remember the stages when I was delirious as it was so long ago, but I believe that I some of these weird dreams were very disturbing experiences. The Causes and Results At the time I was diagnosed my family knew that I may not survive this experience or that the after effect could be life-changing. After six days I came out of an intermittent comatose state. I had lost about 2.5 stones in weight and had arthritic symptoms and ongoing headaches. My biggest problem was that my joints had dried out and this had caused serious discomfort, Especially in my ankles and knees. I subsequently received physio and drugs to help my problems. During my early hours in the hospital, the medical team were desperate to find out how and why I had been infected with viral encephalitis. My colleagues undertook detailed investigations and found that on the second day of ship loading in an unguarded moment I had asked a member of the ship’s crew if they could get me a cup of coffee. My colleagues realised that I had broken the first rule of ship working, this being that you only drink liquid from a sealed bottle. Realising that water may have been the cause they investigated where the ship had last bunkered its water and found that they had topped up in Libya prior to docking in Rotterdam some weeks before. The water used for coffee making in the ships quarters was from a perpetual water heater that encouraged the breading of germs. It was believed that the contaminated ship's water combined with my low resistance to infection had caused me to contract encephalitis. The reason for my low resistance was tiredness as I had been leaving my home near Cirencester at about 5.30 in the morning driving to Cardiff and returning at about 10.00 in the evening. After I regained consciousness I was told that at my temperature had reached such a height that it could have caused brain damage and had it gone much higher I could have died. On the sixth, day, I was found sitting on the edge of my bed asking to go home. Post My Illness I hope this rendition helps others involved in with this problem. Whilst I had some disturbing experiences none of these related to the exemplary treatment that I received from the hospital staff. I realize that the staff at the Princess Margret Hospital in Swindon (now replaced by the Great Western Hospital) acted in an unorthodox way however their innovative actions resulted in my recovery. Arguably I have made a full recovery and within four months of being hospitalised my family and I took a fly-drive holiday in the USA. I hope that my experience brings comfort and hope to families going through the hell of having a loved one with Encephalitis!