Sunday 17 December 2017

I too know how hard it is to live with ME

ESCAPE: Lynn Gilderdale suffered ME for 17 years
ESCAPE: Lynn Gilderdale suffered ME for 17 years

I understand Lynn Gilderdale, a 31-year-old woman who was seriously ill with ME for 17 years, who died last Thursday in Britain, as if I knew her.

I understand her mother (54), arrested on suspicion of murder, who has been interviewed and bailed to return on March 6, in the same way.

Gilderdale fell ill after receiving a BCG vaccination for TB when she was 14, before being diagnosed with ME in May 1992. For much of her life, she was unable to leave her bed, communicating with her family through sign language.

In February 1992, I received vaccinations to travel.

By May 1992, the month and year Lynn got her diagnosis, I was in Cambodia and had a virus not unlike malaria. The field hospital where I was tested could not be conclusive.

There are photographs of me, all over the world, in summer temperatures from 24C to 40 C -- wearing jumpers. I felt cold, ran fevers: most of them were low grade, but sometimes the crawling spiders and bogeymen of childhood came calling.

When I got back to Ireland, I spent a year in and out of tropical disease units, cameras down the throat and up the bum. No one could tell me why I was so tired. They -- and I -- suspected it was my high stress levels.

I gradually recovered and went back to being a fit person with a 14-hour day and a social life. Except I habitually cancelled things, because I was not "feeling well".

At Christmas 1997, I decided to go for three-week trip to Peru and not to have vaccinations. At the last minute I went to a clinic on the strong advice of a colleague, whose husband was from Lima, to get a typhoid injection.

In January 1998, I got bad flu, struggled back to work, resigned after a few weeks and went to bed.

I got out of bed in February 1999, after a year in which I had lived with a mystery, learning to contain its symptoms with ruthless rest, monastic dietary regime, supplements.


A clinical diagnosis of Chronic Fatigue Syndrome from an asthma specialist Prof Austin Darragh followed.

I remember sitting in front of him, weeping, asking him if he thought my symptoms were manufactured.

"I wouldn't waste my time if they were," was his answer. He told me about Gulf War Syndrome, the effects of vaccination on already stressed immune systems.

I went into the toilet and vomited. I had done this to myself. It was a real illness, with no specific cure or end.

Some members of my family, friends, associates thought it was all in my head. There were days when I did.

I tried to cut the grass, to resuscitate my road running. After these separate exertions, I spent weeks immobile, in pain, unable to move. I watched a heron outside my window, still, waiting to feed itself. I learned the strongest and best lesson of my life: waiting is an action.

I am a high energy person, with a positive outlook. My physiotherapist, who treats me weekly for muscular and skeletal problems directly related to the condition, says that's a classic profile of those likely to get it.

As the police statement said yesterday, it's a misunderstood illness. There are no yuppies any more. There is no flu for an ME sufferer.

There were days when I thought about killing myself.

Today, I've been in tears, reading a story that touches my own past and present. Being bedridden at a young age, not having the energy to walk in the views you can see only when you can bear to keep the curtains open, is a living death, .

There are 10,000 people in Ireland today who know that feeling, and 250,000 in Britain, to some degree if not entirely.


Every summer I have a resurgence of symptoms, a severe allergic reaction to pollen. My face swells, my lungs constrict and I watch the garden I cannot be outside in. I am a prisoner. My body fights itself, reacting even to the good in it as if it were a disease.

I count blessings then, and wait for the energy you take for granted.

Lynn was a prisoner 12 months of the year. A prisoner with a positive attitude who possibly had enough.

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