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Dear Fellow sufferers,
My name is Fernando Juan-Ramon, I am 40 years old, separated, with no children. I have been living alone for the last five years, which coincidentally is almost the span of time since the onset of the first manifestations of my illness.Argentina, is my country of birth and youth, and where I lived until I migrated to France, in 1989. Spanish is my native language, however, I am also fluent in French, Italian, Portuguese, and, English.
It was not before 1994, when I moved to work and live in Dublin, that I was thus in full contact with and learnt English. I first learnt to love the English language when I moved to work and live in Dublin, in 1994. Two years afterwards, however, my former partner and I decided to migrate to Sydney, in Australia. And, of course, I do not regret the move. This is a wonderful sunny country.
Soon shall be my fifth month of confinement in my flat, unable to go out, save for short snatches of time, oft bedridden, and alone. As the onset of the illness began to undo my normal life style, I had to face the blank incomprehension, and skepticism, and the ensuing loss of friends and acquaintances.
Needless to say how I feel, as I write these lines, words fail to convey the sense of loss and loneliness and frustration that this illness has brought to my life.
In 1998, when my illness first manifested as a simple throat infection, little did I suspect then how my condition was going to devolve, and how much suffering, how much frustration this illness was going to bring me.
I spent three long months, during the winter of 1999, before my health was able to recover. What began as a simple flu and a sore throat, for which I followed the course of medications suggested to me by my local GP, degenerated into an unmanageable cycle of relapses into and remissions from the illness. Week after week, and to my astonishment, my body seemed less and less able to recover.
The immunologist I went to see at the Prince Alfred Hospital in Sydney performed various blood tests. Though I was relieved to find out that all the tests were normal, and I was in 'good health', as the specialist had said, there was no explanation why my body, or rather my immune system, had taken such an awful lot of time to recover. To this gnawing question, the specialist had no answer. And to belittle my preoccupation he reassured me that it was only a rough time that I had been through, and that hopefully it would not happen again.
Thinking that my health problems could be due to a lack of good nourishment and healthy lifestyle, I began taking more and more care of my health. Fresh vegetables and fruit, fresh natural juices, especially orange juice, multivitamins, C and Zinc supplements, became a faithful part of my diet. I also began swimming regularly, three to four times a week.
Upon my recovery, in September 1999, I began working in a software company. Not two years had elapsed, however, when the illness, like a poisonous snake following some capricious instinct, struck me yet again. I would go to work in a miserable condition, a limbo zone of health, neither completely ill, nor completely recovered. Moreover, the air conditioning of the office would worsen the soreness of my throat, and it would swell and ache. In winter if I went out for a stroll, it would suffice that a strong breeze, or a draft of wind blew against my throat to worsen my condition yet again. I would take paracetemol and gargle with hot water and salt, so as to keep on working in spite of the miserable state I was in.
By November 2001, my condition had worsened to such an extent that I was now unable to work. I was on sick leave for over two months , until the company decided to revoke my contract.
In my quest for a cure, or at least some relief, I set about consulting physicians, specialists of all sorts, and even alternative practitioners. Like Odysseus' wanderings among the Cyclades, so was my quest for health, a journey afflicted with adventures and misfortunes, hope and disappointment. So, I was now facing a condition which seemed to me as merciless as it was incomprehensible.
In 2002, in my desperation, I consulted one of Australia's foremost immunologists at St. Vincent Hospital. He too was at a loss to find a satisfactory explanation of the whys and wherefores of the recurrence of my illness, but he realized that the illness had become chronic. After the failure of his first medical hypothesis about my condition, he realized that it was an immunological disorder of some sort.
Our defense system, he said, is an amazing sequence of chained chemical reactions. It would suffice, however, that one chemical reaction be incomplete, or deficient, to alter altogether the response of the system to an illness, and produce what is called an immunological disorder of some sort.
It was then and there that I first heard of the Chronic Fatigue and Immune Disorder Syndrome.
Under the thrall of this chronic condition I have gradually become an invalid. Like a chained prisoner marching in circle over and over, and over again, my health now seems unable to break free and finally recover.
There are days when I begin shivering as if I have been seized by an ague, a shivering fit, of cold, hot, and sweating stages. There are other days when the soreness of my throat becomes unbearable, when nothing can comfort the misery of being in bed, shivering, voiceless, with my undershirt impregnated in cold sweat, wearing winter clothes, and under several blankets. These are moments of blank misery, when I feel that the hour is a motionless tick, or rather, an oppressive sphere, at the centre of which there is nothing ... nothing but my throbbing pain.
One tries to forget the misery of being ill, but the illness neither forgets, nor forgives for a moment.
When one is chronically ill, life enters into another dimension. The world changes. The sky seems to come down and become unbearably heavy. Even the simplest acts of life - swimming, going out, socializing, working - become extraordinary events.
Since 1998 I have lived in longing for the dawn of a day of a new kind. A day when I will get up feeling completely cured. In my reveries I fancy that a genie, just broke free from an oriental bottle, will draw me up out of the abyss of my illness. And thus allow me, at last, to enjoy life to the full.
Fernando
January 2003
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