From the irish Independent, 22 August 2010 (Story by Joy Orpen)
Imagine being struck down with an illness so invisible it produces no obvious signs or scars, but yet is so devastating that it leaves you unable to perform even the simplest of tasks. Unbelievable.
So unbelievable, in fact, that some people, including certain medical practitioners, still deny the existence of myalgic encephalomyelitis (ME).
Someone who endures the strictures of ME on a daily basis is Sarah O’Callaghan, 32, from Dublin.
When you meet her, you are immediately struck by her bright smile and gorgeous curly hair. Sarah is slim and usually animated. However, there are days when she can do little more than stay in bed, hoping her energy levels will return and that her terrible muscle and joint pains will lift. On better days, though mobile, she paces herself carefully.
Sarah began feeling sick when she was at college. “Eight years ago I woke up feeling unwell,” she says. “I had just completed a very long essay for my French and economics degree and put the tiredness down to overwork. A few days later I began feeling spaced out and dizzy. It seemed like a virus.”
Subsequently, Sarah got on with things and coped for the most part. However, she now believes this episode was the beginning of her ME. And though the onset was sudden, it wasn’t extreme. “My symptoms were muted — I couldn’t go to the gym, but I could function on a certain level,” she explains. “Some people get very ill at the beginning of ME — their virus is much more intense.”
Sarah’s doctor didn’t seem unduly worried by her prolonged, flu-like symptoms and, although the doctor did think something was wrong, she still told Sarah to “move on” with her life.
So, that summer, the college student went backpacking with a friend in Greece, and the trip was a disaster. “I just wasn’t up to it — my energy levels were nothing like they used to be,” Sarah recalls. “I was getting strange sensations in my legs and felt unwell or even ‘poisoned’ after exertion. When I came back I was much worse — I was wrecked.”
In spite of her exhaustion, Sarah eventually got a part-time job doing community development work, but she no longer had what it took to meet the daily challenges of work.
“My boss was so understanding. Apart from the fatigue, I just couldn’t complete cognitive tasks,” Sarah says. “She admitted she had copped on that I was struggling, but didn’t want to say anything to me.” So the job ended.
Finally, in 2003, Sarah’s doctor sent her for a viral scan, which revealed evidence of the Epstein-Barr virus (EBV). “The other label for ME is post-viral chronic fatigue syndrome (CFS), so perhaps this virus triggered my ME,” says Sarah.
The Irish ME Trust says, “Sufferers of this illness are overwhelmed with fatigue and muscular weakness, particularly after moderate exercise. They find themselves lethargic and unable to concentrate — they feel as if they have permanent flu. Any exertion will worsen the symptoms.”
Having a diagnosis did little to make Sarah’s life better. She was sent by her GP to an alternative practitioner who was not understanding of her situation at all. This was particularly hurtful as Sarah had gone from being very fit and keen on jogging and walking — “more active than some of my friends” — to a situation where any exertion was hugely problematic. Confronted by cynicism, she was left feeling frustrated and angry.
As time went on, Sarah’s condition was getting worse. “One day I had to get somewhere in a hurry and I ran, pushing myself over my physical limits. It had a horrific effect. I ended up in bed and couldn’t do anything for ages,” she says.
Her muscle pain was becoming so severe that she could hardly walk and needed to take taxis, even though she couldn’t do any salaried work.
“If I went out for a cup of coffee — and there were times I had to get out of the house — I would have to take a taxi. It was a nightmare,” she says.
Sarah still had no services from the HSE. “To survive, I had to detach myself from the situation and see myself as some sort of experiment. I started immersing myself in research about ME — the medical profession hadn’t offered any solutions.”
Sarah says that of the 12,000 people in Ireland affected by ME, 25 per cent will get better within three years, about half will improve a bit but with many relapses, while the last quarter may remain severely affected.
She says her ME was at its worst two years ago. “I was having excruciating spasms and ended up in hospital. My Achilles tendon was badly constricted; exercise was recommended — that was such faulty thinking,” she says.
“I was also psychologically assessed and found to be perfectly sane and well motivated, and yet I found myself being pressurised into doing graded exercises that were not just painful, they were harmful. I felt so patronised.”
Eventually, Sarah found a practice in Northern Ireland that would give her the injections she needs — they are not easily available here –and she goes there for them regularly.
She has become adept at managing her condition. She has, she says, been receiving invaluable support from Cheshire Ireland who help her get to her hospital appointments and to do her shopping. She says all activities take their toll on her.
“I might do something today, but I might not feel the worst effects of it for two or three days. That’s why you always have to plan ahead,” Sarah explains. “I was trying really hard not to get a wheelchair, but I became so restricted in what I could do, I had no option.”
The irony is that, by conserving her energy, the wheelchair allows Sarah to do a little more walking when she needs to; it also provides overall health benefits. She says if the authorities could only understand just how hard it is to have ME, they might set aside more funds for vital research and not make it so difficult for people to get services.
“I hate being unwell and unable to work. I just hate it. It’s like being in a prison and not knowing when your sentence is going to end,” she says. “It’s like being tied to a post and watching my life pass me by. I am sociable and naturally active, so to feel this restricted is very, very frustrating.”
But not all is lost. Sarah says her illness has altered her perspective on life.
“There’s a wisdom that grows from this level of discomfort and loss,” she says. “There is time to reflect and to appreciate the simple things in life rather than being caught up in the rat race.”
Irish ME Trust, tel: (1890) 200-912 or see www.imet.ie
Cheshire Ireland, tel: (01) 297-41000, or see www.cheshire.ie