My Story
What does living with M.E. mean to me?
To start, a very short description:
M.E./C.F.S. is a complex, and debilitating physiological illness involving neurological and endocrinal dysfunction and immune system dysregulation, which is not improved by bed rest and can worsen with physical or mental exertion. Those affected also complain of many other related symptoms such as fever, sore throats, painful glands, muscle weakness, headaches, joint pains, sleep disturbance, confusion, irritability, poor concentration, and others.
Information from Irish M.E. Trust (IMET) website.
June 1998 I became ill with suspected meningitis. This, thank goodness, was not the case. After a few days in hospital, I was discharged without a clear diagnosis, other than ‘there is nothing wrong with you’. At that time, I trusted the medical profession…
Yet, why was I suddenly unable to walk properly, or sit up while talking to friends? What caused the excruciating headache? Why did I have difficulty coordinating my movements, and felt utterly ill?
Bewildered, I muttered on. A few months later, a helpful librarian posted me information about M.E. from a medical encyclopaedia. It was like reading about myself…
I was ‘lucky’ to have a severe relapse in August of that year. Again I was brought to hospital. This time I was under the care of a neurologist. Huge amounts of test were carried out to rule out any ‘serious’ illness, like M.S. I also had a meeting with a psychiatrist, who after a very basic line of questioning (‘do you like reading/watching t.v. /are your parents alive’) decided that I was depressed. I was put on antidepressant.
This made me very angry. Yes I was terribly sad that time. I had lost my physical wellbeing. I had just given notice to a college that I could no longer continue with the Art Therapy course application. I was upset and bewildered that even a spin in the wheelchair, to get some fresh air out of the hospital ward, made me terribly ill for days.
Suffering from clinical depression? No!
I was discharged from hospital after about 20 days. “Chronic Fatigue Syndrome. I am sorry that we can’t do anything for you…” My G.P., although supportive, had a similar line of ‘advise’…
My life rapidly peeled down to the bare essentials. Sleeping, breathing, eating.When able to get out the door, I would climb down the stairs and walk the couple of yards to the end of the street. Wobbling home, I hold on to the wall for support. People crossed the street to avoid me, as if I was a drunk coming out the pub.
I spend years at home and feel that I have survived this very challenging episode of my life, because of the support from friends. Thank you all!
Slowly, I made some headway in terms of healing. Or perhaps how I was to live with the illness. Although the challenges were huge, I was thankful to wake up in the mornings. I was given another chance to live.
Creativity helped me to be free, to explore desires and frustration. Writing helped to change focus from physical pain, to the world outside my window.
The invention of my alter ego MEme (M.E.–me), a stuffed penguin who travelled to friends and family in Ireland and abroad, became a way to live a double life. (Abstracts from her diaries will hopefull soon be published here).
Thirteen years on and I can proudly say, that even within the boundaries of M.E., or maybe as a result of it, I had several exhibitions with the created artworks and published three books. All done one minute at the time!
I have regained a level of mobility, stamina, wellbeing, and independence. Creativity, writing, friends and my garden are my life. I have a good life. Recovery from M.E. would of course be very welcome. My life would be good in a different way!
If you like more information about M.E./C.F.S. please visit the Links page, or my blog