More than a decade after the ‘hidden illness’ took over her life, turning the simplest task into a Herculean effort, ME sufferer Julie Cushion is resolved to shed light on her often misunderstood condition. She talks to MARION SAUVEBOIS

JULIE Cushion imagines her life as a jagged timeline splintered mid-length leaving two disconnected strands: before and after ME.

“Nothing was ever the same after I got ME,” admits the 47-year-old from Gorse Hill.

“You keep wondering ‘Why me?’ Everything I took for granted was gone. You just can’t walk away from it. You reach the lowest point in your life and have to work your way back up.”

Life as she knew it spiralled out of control in 2003, shortly after the mother-of-two received a flu jab. She became violently ill and was bedridden for ten days.

Once recovered, she put the episode out of her mind but the host of new symptoms that befell her in the weeks and months that followed grew increasingly difficult to ignore.

“I had flu before but it was different,” she says. “It wiped me out. A lot of things started to go wrong after that. I had digestive, concentration and memory problems, my balance and coordination were not right. I became sensitive to light. Gradually I became more and more tired.

“I worked in finance admin, which was quite stressful, and I had a young family – I was juggling a lot so I didn’t make too much of it at first and never thought it was all connected.”

After repeated visits to the GP and a battery of tests, she was diagnosed with an underactive thyroid in 2007.

This, she believed, would put a stop at long last to her endless catalogue of debilitating symptoms. But fatigue and pain continued to wear her down, pushing her to breaking point.

Eventually, she took matters in her own hands and researched her symptoms online. The exhaustion, pain and sensitivity to light all seemed to point to ME.

She presented her conclusive evidence to her GP who referred her to a specialist in Old Town.

After just two hours the consultant shed light on five years of unexplained suffering – she had Myalgic Encephalomyelitis or ME.

Also known as chronic fatigue syndrome, the condition affects the nervous and immune systems. Common symptoms of ME include persistent exhaustion, muscle pain, poor concentration and memory problems, headache, un-refreshing sleep and digestive problems such as nausea or Irritable Bowel Syndrome.

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

“I will never forget the relief of knowing what was wrong,” says Julie with emotion. “He said ‘There’s no doubt you have ME’. I ticked all the boxes. He didn’t dismiss anything. He understood.

“I’ve not really had that kind of understanding from anyone in the medical profession since. “Before I met him I thought I was going mad. I was feeling sick, I was in pain. I woke up in the morning like I hadn’t had any sleep. Some days I couldn’t make my breakfast and brush my teeth. I became depressed, I spent most of the time crying – I was cracking up.”

But the joy of this breakthrough was short-lived. She received only a brief NHS follow-up session, during which she was given tips from GWH’s physiotherapy department on pain management and pacing.

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.

Like a flimsy house of cards, Julie’s existence came tumbling down and with no emotional support to see her through the most punishing days, the isolation took its toll.

Her husband’s doubts about her condition put a strain on their marriage and the couple separated in 2012 after 28 years. They have since divorced.

“I was really struggling on my own. My husband couldn’t handle the illness. People get scared of the illness. But you can’t get away from it. I didn’t have the support at home so I looked for a support group.

“I didn’t want to be a burden.”

Try as she might, Julie was unable to pin down a support group in the region. At a loss, she put an advert in a local magazine calling for fellow sufferers to get in touch. Members of the then defunct Swindon ME Support Group contacted her suggesting she resurrect the charity and so she did.

“I picked up the baton in 2009 and hit the ground running,” she smiles. “The first meeting was a bit scary. I didn’t know how it was going to pan out. But I left invigorated. These people were strangers but since they’ve become friends. I would not have got through the illness and my marriage breaking down without them. We listen to each other and are there for each other in good times and bad.

“Even when family are there for you, they are not always the people you can tell everything to. They want to help but they don’t understand what you’re going through. With the group, you don’t have to explain.”

The group was renamed Swindon ME & Fibromyalgia Support Group, a condition Julie also suffers from.

Coming to terms with her situation in the face of prejudice, not least from the medical profession, against a condition few recognise and still disparagingly refer to as ‘yuppie flu’ proved taxing.

“People can’t see it and you are constantly battling with what people think of you. You would never question the fact that someone has cancer but with ME you always have to justify yourself. It’s so complex, there are so many different symptoms that people think you’re a hypochondriac. They think you’re exaggerating. There is a lack of understanding.”

Over the past seven years, she has learnt through trial and error to pace herself and keep the crushing fatigue at bay.

The illness has led her to re-evaluate her life and reset her priorities.

“All these things I thought mattered are insignificant now. You don’t have energy to waste with ME and it makes you realise what matters in life.

"Pacing yourself is difficult. People with ME were busy or very active and that’s the most frustrating part. You can have this ‘boom and bust’ if you try to do too much one day and the next day you won’t be able to do anything. You have to find the right balance and a way to manage your life. My priorities now are my children and making sure I’m well enough to go to work.”

In 2009, Julie phased her return to work, taking up a job as a dinner lady two hours a day. She now works four days a week as a merchandiser and checkout operator.

“I have to be realistic,” she adds resolutely. “I know that I will never be able to hold down a 37-hour job.

“There is no cure and I will have this condition for the rest of my life. All I can do is get better and manage it well. I am never going to be the person I was but it doesn’t have to be a bad thing. Some people with ME are bedbound so I consider myself quite lucky.

“I focus on living for today. If a cure is found in my lifetime that’s great but I don’t want to think too much about it and trawl the internet for the next magic pill. You have to live in the present and that’s what I do.”

The Swindon ME & Fibromyalgia Support Group meets every third Wednesday of the month at Manor Farm pub in Haydon Wick between 7pm and 9pm.

Julie recently launched a coffee morning at the pub every second Thursday of each month from 11am to 1pm.

To contact Julie, call 01793 614643, or email or visit

To get in touch call Julie on 01793 614643, email or visit