Story by Alice Ryan
Slumped on the stairs, heart pounding and legs like jelly, Jeff Gerrard couldn’t move. For a fit and healthy 27-year-old, it was a terrifying experience – which marked the beginning of a 30-year battle with ME.
“There have been times when I physically couldn’t get out of bed, times when just taking a shower felt like a dream,” explains Jeff, now 56.
“Being totally honest, there have been times when I felt suicidal. I felt like this thing was destroying me and destroying my life . . . I felt there was no way out. And that was too much to bear.”
ME – myalgic encephalomyelitis – is also known as Chronic Fatigue Syndrome. A chronic and debilitating illness, it affects an estimated 250,000 people in the UK, 22,000 in the East of England alone.
A neurological condition, it has many and varied symptoms, from joint pain and headaches to problems with sleeping and eating. The cause of ME is unknown. And there is no cure.
Sitting in the office of his Huntingdon home, reclining in an easy chair, it’s clear that everyday life is a real battle for Jeff.
“Just doing this interview will really take it out of me,” he explains. “I’ll have to be really kind to myself for the rest of the day; I’ll probably go to bed. But I’ve learned – the hard way – to listen very carefully to my body. If I don’t, there will always be consequences . . .”
“What can I say? Life’s a bitch and then you die,” adds Jeff, with a laugh. “But there’s no point sitting here thinking my glass is half empty: it’s half full. There are so many people out there who are worse off than I am.
“I had a mate with multiple sclerosis. He died – it killed him. I’m still alive. And, when I have a bad day, I can tell myself that things will get better, that I will get back some of my life. You can’t just give up.”
Jeff chose to share his story because he wants to raise awareness and acceptance of ME. Until recently, the condition wasn’t recognised: it took Jeff more than 16 years to get a formal diagnosis.
“Not having a diagnosis is a killer. It really is,” says Jeff. “You think it could be a brain tumour, it could be something fatal. Or you think the thing that will definitely screw with your head – that it could all be in your mind.”
When Jeff first fell ill he was on a family holiday in Florida with his wife Valerie and young son James. A successful businessman, working in the electronics industry, he had just decided to emigrate to the United States to start a new job and a new life.
“For two to three weeks before we left I had gastroenteritis,” explains Jeff. “But, being me, I worked on through it. I didn’t even slow down, really. I thought of myself as indestructible: my body was a machine that never let me down.”
But then, a matter of days into the holiday, Jeff collapsed. Walking back to the hotel one night, after a meal in a restaurant, his heart began to race, he felt dizzy and faint and his legs went from under him. With Valerie’s help, he made it back to the hotel – where he slumped on a staircase, unable to move for almost three hours.
“It’s like being paralysed,” explains Jeff. “You have absolutely no physical energy. When I tried to move my heart started hammering and my breathing was laboured. Even to move a little bit involved so much effort, it was like climbing a mountain.
“Nothing like that had ever happened to me before so it was a bit of a shock.”
A doctor was called and he suspected heat stroke. When he woke next day, Jeff says he felt tired, but assumed he was better – and so carried on as normal. By that afternoon, he had collapsed again. “That’s when it dawned on me that it wasn’t over,” adds Jeff. “In fact, that was only the beginning.”
The family moved to Los Angeles as planned. Jeff found the job of his dreams. It should, he says, have been a wonderful and exciting time.
But, as the months went by, Jeff’s health failed to improve: he was rushed into A and E numerous times, in the wake of yet another collapse.
Forced to quit work, the young dad was desperate to find out what was wrong. After endless tests, which left him “feeling like a pin cushion”, doctors still drew a blank.
And no treatment seemed to help: over the last 29 years, Jeff has tried everything from light therapy and faith healing to aura cleansing and aromatherapy.
In the end, he and Valerie decided to leave America for her native Canada, where she became the breadwinner. Jeff took a part-time job to help make ends meet but, at times, even that was a struggle.
“My wife is one in a million,” adds Jeff. “She was working, looking after our son and looking after me. Without her, I don’t think I would have survived.”
Little by little, thanks to plenty of rest, Jeff’s condition began to improve. Always ambitious, he threw his renewed energy into his career: after winning a job with a recording studio, he again set up his own business.
Then, in the late 1980s, he, Valerie and James returned to England where Jeff’s health continued to be “a real rollercoaster”. In 1996, he was finally diagnosed with ME.
“I did lots of research on the internet, came across ME and thought: ‘That sounds like me’,” he explains. Consulting an expert, Jeff was told he did, indeed, have the condition.
The news was, he remembers, a mixed blessing. “The good news was that I knew what I had, I knew what was wrong. The bad news was that there is no cure.”
Since then, Jeff has suffered a series of relapses. One, in 2003, left him barely able to feed himself.
His symptoms include chronic exhaustion, panic attacks, extreme sensitivity to light, blinding headaches, vertigo, sweats and shakes, memory loss, high blood pressure, a racing heart . . . the list goes on.
Jeff can’t work. His social life is, he adds, very limited. And he has separated from Valerie (though she lives nearby and continues to care for him).
Determined to live as full a life as possible, Jeff has to abide by a strict set of rules. He has to eat regularly, but avoid certain foods and drinks (caffeine and alcohol, for example, are both out).
He has to rest as much as possible and never push himself: he even limits the time he spends with his two young grandchildren to just a few minutes at any one time.
“Underneath it all I’m still a very, very bad person,” says Jeff, with a wry smile. “I still have ambition. I still have a drive to achieve success in life, through having my own business and being a useful and valued family member. That’s really, really bad for a person with ME.
“Unless they find a miracle cure, it’s very, very unlikely I will achieve those things. What you need to do is let go of your old life, let go of your old expectations. And that’s hard.”
Despite all he’s been through, Jeff refuses to give up. “I enjoy music, watching films and, when I’m up to it, a visit from the family,” he says. “And my wife keeps me going. She is the one miracle in my life that makes it all worthwhile.
“You have to count your blessings, don’t you?”