When I celebrated the beginning of the 1990s, in an American city on holiday with my family, I did not imagine that I would develop a chronic illness a few weeks later. To start with, things seemed fairly simple; I had "a virus" and would soon be well again. Time passed, I saw doctors and had tests; but I was generally dismissed with the assertion that if I increased my activity I would get better. I was sent to a psychiatrist, who saw my family and me regularly at a local hospital. Physically, it was very hard for me to travel and sit up in a chair, emotionally it was devastating. My illness was ignored and we answered questions on family dynamics and character. After these sessions I cried for hours, exhausting myself even further.
From Day One I had been unable to go to school (I was 13), and the education authorities took their approach from the doctors: that I was debilitated and should be encouraged to increase my activity. Home tuition was granted as a temporary measure while I ‘got back to school’ but I was allowed no less than five hours a week and this was far too much.
I felt under pressure from all quarters to do ever more and more, even though I was already pushing myself too far and my health was deteriorating. Several months later the psychiatrist started coming to see me alone at home every week. I became very confused about my illness and my identity because other people's beliefs didn't fit what was happening. I didn't think so many people could be wrong. I felt that my uncertainties would be taken advantage of if I admitted my feelings, so I talked openly to no-one.
These days, my situation is a lot better. I have made new friends; much of my social contact is via the postman with people who also have M.E.
I have had four different GPs and two of them have been supportive, including the present one. It does make a huge difference to feel that I have the backing of a doctor.
The school treated me well once they had accepted the long-term nature of my illness. I have been having half-hour lessons with an understanding home tutor which are suited to my abilities and needs, and they have contributed a lot to my quality of life.
In some ways I am much more vulnerable as a result of feeling disbelieved. At the same time, there have been some positive effects. I like to think that I'm less judgemental and more aware of human nature and hidden dimensions.
My M.E. is no better. I have been in bed for years, though I can walk around indoors a bit (luckily I live in a bungalow). Although I am pretty limited by my symptoms, there are still things that I can enjoy. Ever since I was tiny I have loved music, and listening to short classical pieces is one of my favourite activities.
In my room I have themes. These involve posters, pictures from magazines, in fact anything that ties in with the relevant topic e.g. 'France', `Trees', `Cats', `Colour', 'Tropical Island’. A change of theme (using other people's energy) is the next best thing to a change of scene, and they are also talking points and events to remember.
Last year I obtained a fully reclining wheelchair, after many phone calls. A standard wheelchair makes me feel very ill within a few minutes. Lying down increases my mobility considerably (though it is still very limited) and the vibrations are less than a standard chair. I can now not only go in the garden sometimes, but move around and see it from several different angles! The easiest direction to see is upwards and I have developed an interest in stars and space. Clear nights do not often coincide with evening energy, but when they do, I love to try and imagine the vastness of the universe. It is often a spiritual experience and I feel God's presence.
As a result of my illness, I have learned how to savour moments of pleasure to a much greater extent. I can't pretend that I have got used to being ill. It is really hard and I struggle, but I have learned to enjoy simpler things and to try and live for this moment.
This article was printed in ‘Perspectives’, the magazine of The M.E. Association (21st Anniversary edition 1997)
M.E. ASSOCIATION, 4 TOP ANGEL, BUCKINGHAM INDUSTRIAL PARK, BUCKINGHAM, MK18 ITH Website: www.meassociation.org.uk