I’m in contact with many people with M.E. both by e-mail & letter & it is such a lonely disease with many people not being diagnosed properly or given any help even today. I had to give up my job of teaching & lecturing in 1986/7 & now spend any energy I get on writing (mainly poetry – my passion, but also short stories & articles) & painting, which I’ve always done, but ironically can now spend more time doing the things I love most…

I was supposed to do an M.Ed. in Human Relations at Nottingham University from October 1990, but I had to give up my place due to ill health.  They kept my place open for me the next year, but I was never well enough to do it.  I wanted to become a counsellor.

M.E. is really a rollercoaster of an illness. For about 11 years until 1997 I used to run a self-help group & was a counsellor for women with Endometriosis (allied to the Endometriosis Society), which I had since Christmas 1980 & it started together with M.E. & an under-active thyroid after a very bad upper respiratory virus from which I never recovered.

In December 1980 I had a ‘knock-out’ type virus with chest pains, exhaustion, muscle pain & weakness, sweating, severe head & neck pain, shivering & shaking, difficulty breathing, sleep disruption with nightmares, nausea, dizziness & swollen glands. Menstrual problems/pain were exacerbated after this viral infection. I had 5 weeks off work (teaching). When I went back to work, I became increasingly exhausted with viral symptoms as I have previously described flaring up. I had severe chest pain & palpitations on exertion. I really thought I had a heart problem. With exhaustion & new menstrual symptoms of severe period pain, painful ovulation, heavy periods, pain in lower left side, bowel pain on a cyclical basis & bad PMS, I became increasingly depressed.

All the above went undiagnosed for years by my former GP, who told me it was all ‘psychosomatic, nerves, stress, being a woman!! etc, etc’, but when I was rushed into hospital, as an emergency for surgery in 1983 for Endometriosis, then I changed my doctor to a female doctor at a different practice (she has recently retired), things began to change, though it was always a real battle to get all my symptoms believed & diagnosed, probably because of the way I look… I was always told I looked too well to be ill!!

Most people know very little about M.E. & don’t really care about it, until they have it or someone close to them does, but that is human nature & you can only really appreciate how an illness makes you feel, if you suffer from it yourself.

People find illness, when something tangible isn’t visible, always difficult to accept.

As I’ve had M.E. (I’m not bothered by Endometriosis now, as I had a total hysterectomy in 1989 & have daily Thyroxine for an under-active thyroid, which was detected in 1991) for 25 years, I have now come to terms with it, though it still causes intense frustration for me, because I am naturally a very active person & have loads of things I want to do in life.

Ian, my lovely husband &, has been so important to me & is so kind, but he probably too has a milder form of M.E. (from his case history before he met me), where he can work, but has to rest a lot of the time at home. As he is self-employed & works very long hours at his business, it is very difficult, as he does the shopping for me & anything else that takes a certain amount of energy. We have a cleaner & a gardener to help us (privately employed).

At the moment & for a few years now, I’ve reached a sort of plateau where I can do few things some days, but pay for it by having to rest/be in bed afterwards, although I'm not bed-bound for weeks/months at a time now like I was at one time. Anything I do costs me be it physical activity or mental concentration. I don’t do anything in the evening, because I’m far too exhausted & am often in bed by 8 or 9 pm or earlier. Recently I went through a very bad relapse (after flu + two infections, antibiotics + antifungals, which both totally disagreed with me).

I became a Christian in 1983 while very ill with M.E. & undergoing a year of psychotherapy, as all my medical symptoms were classed as psychological, but I was severely depressed & I also had to grieve for the death of my father from leukaemia in 1980, when I was 18, which I had suppressed when going away to do my English Literature degree in Reading & being away from home for the first time.

My Christian faith is very important to me & I have received God’s healing on many occasions & been involved in the Healing Ministry.

I am an inveterate animal lover, who has always had cats & rabbits, though my lovely cat, Misty, recently died & I miss her dreadfully. Animals are wonderfully healing & I can’t exist without their company, so will be looking for a new kitten soon.

I am also very lucky to live inside a Country Park with two lakes, from which an abundance of wildlife overflows into our garden & on a good day I can walk out of our drive into the greenness of trees echoing with the soft lapping of water.

I have recently created & designed three websites & have also produced & designed three collections of my poetry illustrated with my paintings called *PROMISE*, *MANDALA* & *SECRETS* at Vivi*Press.

© Vivien Steels 2006 [reprinted with permission]