Susan M. Rademeyer
I was born in England in 1946. I had the normal childhood sicknesses mumps, chicken pox, measles etc. According to my mother I had a particularly bad bout of measles, which she refers to as "black measles" as the spots were a bluish colour. I have never heard of this before. Up until about 12 years old I suffered with repeated and severe bouts of tonsillitis and was referred to an ENT surgeon. I was put on a waiting list and eventually had my tonsils removed at age 17.
During my primary school years I was considered to be bright and was always in the top group of students. I passed the entrance examination for King Edward VI Grammar School. I think my problems started around about my second year in this school, when I was about 13 years old. I became extremely lethargic, I was unable to concentrate in class, and would often fall asleep during lessons. If we had a free period I would put my head down and sleep through the whole time, having to be woken up by friends. During breaks, I would seek out any suitable place where I could snatch a few moments of sleep. I would without fail, fall asleep on the bus, both going to school in the morning and going home in the afternoon. Sport was a nightmlare, I desperately wanted to participate, and I did, but the effort would leave me exhausted and once again sleeping for hours. I couldn't do homework as soon as I sat in a chair I would fall asleep for hours only waking up to go upstairs to bed. I fell far behind at school, never participating in lessons, not handing in homework, and I think eventually the teachers gave up on me and left me to my own devices. During this time, my mother did take me to our local doctor, who looked into my eyes and said I was not anaemic!
My mother eventually started to tell me and everyone else that I was suffering from Narcolepsy. For years I thought this was my problem, but eventually I realised that I had none of the other symptoms for this condition. This was the vein in which my life continued. After leaving school I went to work in the British Post Office, as a postal and telegraph officer. I would lose concentration very easily, everything would blur in front of me and I would desperately try to fight off the overwhelming weariness, which enveloped me at least 2 or three times a day. On occasion at work I have gone to the bathroom and fallen asleep sitting on the toilet. Most lunchtimes one of my colleagues would have to come and wake me up from a deep sleep.
I would still go home in the evenings, and after dinner, sleep for the whole evening and right through the night.
I married at age 2 1, my husband would complain bitterly about my continual tiredness and lack of enthusiasm for anything. I was too tired to do anything except sleep. I have been to dinner parties, or even at my own dinner parties I have found my energy draining away and I have been falling asleep at the table. Sometimes I would sneak off to the bathroom and lie on the floor just to try to revive myself. In 1976 we emigrated to South Africa. I still suffered chronic fatigue and started to get bouts of deep depression. My sleeping was an extreme embarrassment to me. I complained to our then succession of family doctors, who all treated the symptoms, i.e. fatigue, muscle aches, depression etc., mostly with anti depressants and sleeping tablets. I was sent by one such doctor to a prominent psychiatrist who diagnosed endo-reactive depression and treated me accordingly. I was then working for a building society and was booked off work for ten weeks.
My marriage failed and I re-married in 1981 to my present husband. During the first 15 or so years, it was not necessary for me to work and although my symptoms continued as before, I was able to rest for long periods every day. I still suffered from all the ME symptoms and during this time I first heard about "yuppie flu" and began to compare my symptoms with those of other sufferers. I asked my doctor several times if I could have ME but he said nothing had been proved about the existence of ME and I would come home with my usual prescription for anti depressants. I began to realise however that it was actually the fatigue, which was making me depressed. During this time I was hospitalised for depression, and treated with sleep therapy - wonderful! At the end of 1996 I started to work part time. I managed to drag myself through most days. Every afternoon after work or after taking my daughter to her extra mural activities I would be in a very bad state. I would suffer very bad headaches, muscle pain and of course the terrible fatigue. I would come home and sleep for hours, and would wake up very confused not knowing where or who I was. About every two weeks it would be so bad that I would be in bed from lunchtime on Friday until Saturday afternoon or evening. I would be convinced on these occasions that I was getting flu as my symptoms were those of influenza. They would however disappear as quickly as they came. I remember remarking to a friend on one occasion, that although I could never remember getting up in the morning and feeling well, I never actually did get the colds and flu that most people suffer from every year.
In October 1997, I felt so bad that I just couldn't carry on and I went to a new doctor in the hope that he would be able to help me. I had got to the point where it was an effort to put one foot in front of the other every day. At last I found someone who took me seriously. He put me on a course of Reactivan to give me a boost for a couple of days, and sent me for blood tests. I tested positive for coxsackie virus. I knew about the connection of this virus with ME , and really thought I had found a solution when I was given a course of drips which were supposed to help, along with the advice that all I could do was rest as much as possible, not try to exercise, and to adjust my life accordingly. Just to know that I might have a reason for the way I had been feeling for all these years was in its own way a help. However the treatment did not help and I was feeling really terrible again in a very short space of time. The headaches returned even worse than before, they would happen almost every afternoon, reducing me to tears. Along with this came neck and shoulder pain, muscle aches in most parts of my body, particularly my wrists and hands. My mother, who was visiting said she could actually watch my face change as the energy drained away and the fatigue took over.
In January 1998 1 was searching on the Internet for information about Chronic Fatigue Syndrome, hoping for a lifeline. This was where I found out about Dr. Petrovic's treatment and the success he was enjoying with ME patients all over the world. I read the testimonials from his patients and phoned him immediately. After reviewing my case history Dr. Petrovic agreed that I was indeed suffering from ME and agreed to put me on his programme. I was very excited , I felt that maybe at last I would get a chance to lead a normal life , I had stood in church and prayed for help with my problem in the past and I now felt that my prayers may be answered. I am now in my fourth week of the treatment. My recovery has been gradual but definite. Since the first day of treatment I have not had a headache or any pain in my muscles. I have felt a marked improvement in my energy levels. I have felt positive, no depression. I can see that my skin no longer looks grey and my face has lost its haggard appearance. People are telling me I look better than I have looked for a long time. I am finding it easy to smile , At work I get to the end of my day and I am not overcome by that terrible feeling of every ounce of energy draining out of my body. I feel better and brighter when I get up in the morning.
For the first time that I can ever remember I saw a movie all the way through. This week I ventured into the pool for the first time for years. I swam up and down 4 times which would have normally left me breathless and exhausted and I felt fine. For the first couple of days I found taking so many tablets very hard going, but after so many years I am extremely motivated and now it is no problem. In conclusion I am very angry that I have suffered all these years from something which up to very recently nobody knew anything about. I am angry that ME has robbed me of probably half my life. I wanted to feel well, I wanted to have as much energy as everyone around me had. I didn't want to sleep, I hated sleeping, it made me feel guilty and foolish. Now I have a chance to feel normal again, I have started down the road, everyday there is an improvement, and I look forward to much more. Doctor Petrovic has handed me a lifeline and I am grateful for it. On Saturday I start my second month and I am looking forward to even better results.