Winning battle with chronic fatigue
ME sufferer refuses to let a persistent, debilitating illness get in way of lifelong ambition
When Jude Adams was diagnosed with myalgic encephalomyelitis (ME), her illness could not have come at a more frustrating time.
After years nursing a secret passion for singing, Adams, a former fitness industry professional, had begun to take lessons, performing in public for the first time at her 50th birthday celebration. But within 12 months she found herself with the typical symptoms that accompany ME (also known as chronic fatigue syndrome, or CFS): persistent tiredness, muscle aches, flu-like symptoms, insomnia and stomach problems.
Yet six years on from the start of illness, Adams has not only recovered much of her strength and vitality, but also recorded her first album.
“I am 57,” she says, “and I’ve done this almost because of my health issues. I might not have made my album if I hadn’t had ME.”
ME, which is more common in women, usually develops when people are in their early 20s to mid-40s, and while researchers believe there may be a genetic component, its cause is not clear. Britain’s National Health Service says that viral or bacterial infections, immune system deficiencies, hormone imbalances and psychological problems, such as stress and emotional trauma, are potential triggers.
The condition affects about 250,000 people in the U.K., according to the NHS. (A 2014 Canadian Community Health Survey notes that close to 408,000 Canadians suffer from ME .)
For Adams, who lives with her partner, Marg Mayne, the illness came on in stages.
The couple had moved to the countryside in 2004 to buy their dream home. Adams had retrained as an interior designer and renovated their new property.
This was also when she decided to take up singing lessons, having lacked the confidence to do so before. After finding a local music teacher, Adams was confident enough to sing for family and friends.
She attended two jazz workshops and formed a small band that performed locally.
But the next year, Adams found herself ill with a “nasty and persistent virus” that affected her on and off for 12 months.
“I had these conking-out episodes. I felt so tired, but this wasn’t ordinary fatigue and nothing relieved it. I felt as though my batteries had just gone. I was exhausted physically, mentally and emotionally. It was very confusing, frustrating and upsetting.
“I also found my attention span and concentration were affected, I had trouble with my digestion and I had mood swings.”
In November 2011, a general practitioner diagnosed ME. “On the one hand, it was a relief to get a diagnosis, and on the other it was mind-blowing.
“I had known a couple of people with ME and knew it was a tough illness. Moreover, the diagnosis came without real support. I was effectively told to go away and look at some websites.”
But Adams and Mayne were determined to find a solution. “Her emotional support has been, and is, extraordinary,” says Adams.
“Plus, we’ve worked hard and been lucky that we can afford to pay for treatments which have helped me.”
In Britain, ME is not considered to be a psychological condition, but some experts believe it is a physical illness with a mental and emotional dimension.
“I totally buy into the fact that it is a combination of all parts of you — that they all impact on each other,” says Adams.
“I had been putting myself under a lot of stress. Then I got a virus and a vicious circle began.”
While there is no medication to treat chronic fatigue syndrome specifically, but drugs, including painkillers and antidepressants, may be used for symptomatic relief.
The NHS recommends a variety of therapies, including cognitive behavioural therapy (CBT), which can help sufferers to accept their diagnosis and increase their sense of control over symptoms.
Graded exercise therapy may also be recommended, as is activity management and pacing your lifestyle.
Adams had CBT before moving on to acupuncture, yoga and lymphatic drainage massage.
She also tried a mind-training system called the Gupta Programme, which works on the amygdala — the part of the brain linked to stress — which she found helpful, plus cranial osteopathy and working with a nutritionist to improve her diet and for advice on supplements for specific symptoms.
All these approaches offered incremental improvements over time, and Adams rates herself as 95 per cent recovered.
“But it’s a management game,” she says. “You have to keep yourself in balance, work out how much you can take on and not overdo it. I have such a natural enthusiasm for life, and want to achieve and follow my dreams and ambitions, but I have to rein myself in quite a bit still.”