Date:    Sat, 1 May 2004 14:19:29 +0100

From:    Dr John H Greensmith <drjohnh@GREENSMITH53.FREESERVE.CO.UK>

Subject: Article: "Illness that steals your normal life" ("Seven" magazine, p.5, in Bristol's "Weekend Post" (1 May 2004)

 

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drjohnh@greensmith53.freeserve.co.uk

Dr John H Greensmith

36a North Street20

Downend20

Bristol

BS16 5SW

0117 956 0150

 

 

 

ILLNESS THAT STEALS YOUR NORMAL LIFE

 

 

11:00 - 01 May 2004

 

 

 

Monday, May 10 sees the start of this year's M.E. Awareness Week. Seven days in which to attempt to clear the fug of confusion that surrounds the debilitating illness.

 

M.E. has bewildered medical science. It currently affects an estimated quarter of a million sufferers in the UK alone, rendering them incapacitated and almost unutterably exhausted, sometimes for years.

 

M.E. is easy to make sweeping assumptions about. And to ignore.

 

But for the thousands of sufferers in the UK it can be a traumatic experience that loses them jobs, ends relationships and leaves them in the pits of despair.

 

Karen Hoy is slowly but steadily climbing out of that pit after a decade long battle with M.E. Until she became ill Karen had been pursuing a very successful career in wildlife film production.

 

"I can't really pin down the moment it struck, but when I was working on a shoot in the Serengeti, in East Africa, I had a kidney infection and I wasn't able to get it treated quickly enough.

 

"I was then put on a series of antibiotic courses and I definitely feel that that was a factor because from then - which would have been about 1995 - I had a series of skin problems, and infections all over my body. There was clearly something going wrong with my immune system.

 

"The following year I was diagnosed with asthma and was chronically tired all the time."

 

Suddenly Karen began to feel better and enjoyed a period of fairly good health, putting down the illness to the long hours necessary for natural history film-making, matched to an active social life. Then she relapsed.

 

"My concentration started to get really bad and I was getting these terrible muscular aches all over my body. I had to start taking painkillers. I also started to feel terrible after eating, almost poisoned by everything I ate."

 

To counter this Karen adopted a vegan diet. But in hindsight this further complicated matters as she discovered that mineral deficiency is a factor in M.E. "In the short term, though," she says, "I did start to feel better and had a period of OK health.

 

"At the time I was doing freelance work for Partridge films in Bristol and was very busy. I began to get these bizarre neurological symptoms.

 

"I'd be walking around my flat in my bare feet and I wouldn't be able to feel the carpet. It was really weird and I'd be getting needles and pins down the right hand side of my body. At first I didn't take much notice but it was happening more and more."

 

Karen went to her GP and was immediately entered for neurological tests. She said: "They couldn't find any problem, and again I started to feel a bit better."

 

A few months later, though, the illness paid another visit. Karen, who had started a writing diploma at Bristol University, was with a friend in Brown's cafe. A perfectly normal setting, two friends in a bar chatting away.

 

Karen said: "I suddenly just couldn't speak. I could open my mouth but I couldn't physically speak."

 

The symptoms quickly passed. She managed to make it to a lecture and afterwards the friends went for a meal. But at the restaurant something went badly wrong for Karen.

 

She said: "I could not, physically could not, sit up straight. I literally ended up with my face in my soup. I couldn't stand up, my legs were like rubber bands. I had to be carried out by my friend and I'm sure anyone watching would just have presumed I was drunk."

 

Karen found the episode very frightening: "I was shocked and cross with myself. It just didn't make sense at all."

 

The next day Karen managed to make it to her GP, who diagnosed stress. "I wasn't stressed. I knew I wasn't. I was busy but very happy and in control of my life. When the blood tests came back the doctor realised that it wasn't stress either. I had a raised white blood cell count and was diagnosed with a non-specific virus".

 

In other words there was something wrong but it wasn't clear what. Either way, it laid up Karen for four months, followed, again, by a period of respite.

 

The next time the illness, whatever it was, came back it had it's bags packed ready to stay.

 

"I started to feel this incredible tiredness, my memory was shot to pieces and It was becoming impossible to sit up properly. Things like typing - which I was doing all the time - were becoming more and more difficult and exhausting."

 

Karen visited her GP again. "She gave me a very vague diagnosis, she said it was a 'post-viral thing'. I asked if it might mean I had M.E., which at the time I really didn't know much about, and clearly she didn't either, and she said, 'sort of, maybe'." Karen, not satisfied with the answer, asked to referred.

 

As she waited for more tests and a definitive diagnosis of what was wrong with her, Karen's condition gradually began to worsen. Anything that would slightly exert a healthy person was exhausting Karen. Her work and social life ground to a near halt.

 

"My friends and family were very supportive, but it was very difficult because, obviously, how could they understand what was wrong with me, if even I couldn't? What was immensely frustrating was the complete lack of information and the way I wasn't being taken seriously, which I've since come to learn is a very common experience for people in my condition."

 

Karen had more tests with a neurologist. Nothing conclusive was found, but this doctor took Karen seriously and M.E. was exposed as the culprit.

 

"It was a huge relief to actually know, even though things were getting worse."

 

Karen began spells of such exhaustion that she became practically incapable of doing anything other than to lie and wait for the symptoms to ease.

 

"It was the first time in my life that I experienced true boredom. It sounds a light way of describing it, but it was crushing, terrible boredom. But I did find pleasure in small things, like watching the rain fall on the garden. Better than to wish your life away waiting for a cure."

 

Karen kept a video diary of her illness to try to make sense of the way her life was going. It was a strenuous effort both mentally and physically - even turning on the camera took supreme effort.

 

"Sometimes I couldn't do anything other than just sit in front of the camera in silence, but I knew that I was conveying what it was like to have M.E. and it was good for me to feel that even though I was going through all this, I could still create something."

 

Nevertheless, watching the film back can be an emotional, "chilling", experience for Karen, "to see how bad it got".

 

After a period of nearly 10 years of recurring illness, Karen is on the mend. She's found a private local GP who's an M.E. specialist, Dr David Dowson, who has blazed a trail in a much underfunded area of medicine, and moved from inner city Bristol to airy Bradford-on-Avon, away from the toxins of city life that Karen's body has become so ultra-sensitive to.

 

"I want to get back into work. Right now I'm only really good for a couple of hours a day so I use that time to throw myself into things that are really mentally challenging. I'm slowly making up for all that lost time.

           

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