I would wake up more tired than when I went to bed

“SOME days getting up from the sofa and walking to the table was just about as much as I could manage. Then the effort of eating was too much; I was so exhausted,” Les Gubbins shakes his head motioning to the dining room over his shoulder - no more than five steps from the couch. The memory of his absurd shuffle and laborious struggle to lift a fork to his mouth still rankles nearly ten years on.

“The worst part was not knowing why I felt like this,” says the 70-year-old from Old Town, his frustration palpable. “The doctors didn’t have a clue,” he adds. “We had back and forth appointments for nine months and we were going nowhere. I just thought, ‘Please Somebody do something.’ I could virtually do nothing. I woke up more tired than when I went to bed. Sleeping made no difference.”

Sluggish, drained and reduced to a shadow of his former energetic self in a matter of weeks, Les became housebound, unable to so much as heave his listless body out of bed most mornings.

It would take another 18 months for the father-of-two to be diagnosed with Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome – all thanks to his wife’s refusal to watch him wither away and her determination to wade through red tape to get to the bottom of his unfathomable exhaustion.

It all started in 2007. Les was at work, loading up a lorry in the Travis Perkins yard when he was hit by a rush of fatigue unlike anything he had ever experienced. After a short break though, it lifted as suddenly as it had overwhelmed him and he put the temporary glitch to his physically demanding job.

A few months later, he was gripped by chest pains at home and rushed to hospital. He was kept under observation for five days and prescribed beta blockers for his heart before being released. When the crippling ache returned after a few days, he was hospitalised again but sent home with no clear explanation for his setback. His heart did not seem to be the root of the problem but no-one was able to shed light on his peculiar symptoms.

Weakened by his hospital stays, he was unable to work for three months. Back on moderate form, he eventually returned to the yard.

His troubles seemed to be firmly behind him when, a short while later, he was overcome with shooting pain in his chest reaching for his car door. He never went back to work.

Despite the severity of his symptoms, doctors were unable to pinpoint a cause. As far as scans, X-rays and blood tests showed, Les was in perfect health.

Meanwhile, Les grew uncharacteristically lethargic, to the extent he could barely muster up the energy to brew a cup of tea. So much as stepping outside for a short stroll was out of the question, reading triggered blinding headaches and no amount of sleep seemed to quench his inexplicable and persistent exhaustion.

Once an active man and avid football player with a habit of jumping on the treadmill after work, the simplest of daily tasks now proved a Herculean effort.

Certain the bewildering symptoms were the tell-tale signs of ME, his wife Margaret embarked on a mission to persuade doctors they had overlooked the obvious – to no avail. Very little is known about ME and as there is no set test to diagnose it, few people recognise the hidden illness. Some still disparagingly refer to ME as ‘yuppie flu’ and many sufferers have to contend daily with prejudice and ignorance, not least from the medical profession.

“A friend’s daughter had had it, so that what made me think what he had,” explains 68-year-old Margaret. “But when I told the doctor she said, ‘ You don’t want to go down that track.’”

At the end of her tether, she took matters in her own hands and requested the forms required for a referral from the specialist ME services at the Royal National Hospital for Rheumatic Diseases in Bath. She and Les marched into their GP practice demanding he sign the paperwork.

“We had it in front of his nose and said, ‘We want to go’ and he reluctantly agreed,” she recalls. “Les could only just about walk around the house at that point. We wanted to know and do something about it.”

“Doctors made it sound like I was a nuisance,” adds Les. “That was the biggest stumbling block.”

By mid-2008, they had their referral. Within an hour of speaking to a specialist in Bath, their suspicions were confirmed. Les had ME. Also known as chronic fatigue syndrome, it affects the nervous and immune systems. Common symptoms include persistent exhaustion, muscle pain, poor concentration and memory problems, headache, un-refreshing sleep and digestive problems such as nausea or Irritable Bowel Syndrome.

After nearly two years of uncertainty and doctors’ dubious expressions or flat-out frustration at the mention of ME, the couple felt vindicated.

“We were both in tears,” says Margaret. “It was relief that someone was listening to us properly.” “It was like a weight was lifted,” smiles Les. “Even though they don’t have a cure, just knowing what was wrong was what I needed. The uncertainty made us feel worse. It knocks your confidence.”

This marked a hard-earned victory but heralded the start of a nine-year battle to fend off the debilitating condition.

While some patients make good progress and virtually recover, others can be ill for a number of years. A significant minority are severely affected and bedbound or housebound for months, years or even decades.

As there is no cure for ME, pacing is the only way for patients to gradually regain their strength and build their stamina back up.

“The first three years were the worst,” confides Les, who attends the Swindon ME & Fibromyalgia Support Group. “But pacing helped. I was about learning to try and do things slowly. I still do it now. Every day we work out what we’re going to do and how we’re going to do it. It helps mentally, knowing and preparing us. If we plan a journey I have to make sure I get more rest the day before. I have to push myself but not too much. You have to get the balance right otherwise you suffer more.

“After a while I was able to go watch Swindon Town at the County Ground. That was the first major thing I did. But it’s still really up and down and very unpredictable. Sometimes I have a bad spell when my body just goes and I feel terrible.”

It took some months before he felt confident enough to pick up his old hobbies again- skittles and bowls.

“You have to take it each day as it comes,” he shrugs. “The hardest part all these years has been not being able to do what I want to do fully, when I want to. Even now a 10 minute walk is all I can manage at once.”

Unfortunately his health is still tentative and after nearly a decade grappling with the erratic ups and downs of ME, he fears he may have missed his ‘recovery window’. Whatever the future holds however, he is resolved not to let the illness win.

“In the first few months I thought it would go away but now I’m resigned to the fact that I’m probably not going to get better. It’s very bittersweet.

“But it’s not the end for me; I’m not going to let it beat me completely. We met someone who had it for ten years before it went away. There’s hope yet.”

To get in touch with the Swindon ME & Fibromyalgia Support Group call 0844 887 2357, email swindonmesupportgroup@hotmail.co.uk or visit swindonmesupportgroup.org.