Saturday 1 October 2016

Painful reminder: 'Fibromyalgia strips away your self esteem'

When Claire Jackson was diagnosed with fibromyalgia, she faced the challenge of finding ways to improve the quality of her life. She tells our reporter how accepting her limitations helps her to cope with this painful condition

Joy Orpen

Published 02/11/2015 | 02:30

Claire Jackson: 'CBT is vital because if you don't change your negative thoughts, you'll never get well'. Photo: Gerry Mooney
Claire Jackson: 'CBT is vital because if you don't change your negative thoughts, you'll never get well'. Photo: Gerry Mooney

One day Claire Jackson (40) realised that if she didn't take control of her health problems, she would be the ultimate loser. So she took stock, did what she needed to do, and today, she is seeing real progress.

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Claire grew up in a Presbyterian family in Dungannon, Co Tyrone. After school, she did business and marketing studies in the UK. In her third year at college, her father died, so she took time off to be with her grieving mother. Claire then went back and finished her degree, and after that she moved to Belfast, where she got a job and bought a house. Soon after, she was introduced to a young man from Dublin called Michael Jackson. Claire was soon smitten. "He was the funniest man I'd ever met," she says fondly. In 2002, they married and settled in Dublin; they have two children. "I don't think my mother ever forgave me for moving to the South," admits Claire, "but she loved Mike."

In 2003, her idyllic life was challenged when she was involved in a car accident in Stillorgan. And though Claire walked away unaided, about a month later she began to experience severe pain in her shoulders. Her GP referred her to a rheumatologist, who was unable to make a conclusive diagnosis. Meanwhile, the symptoms increased. "Over the next few months, I began to get muscle pain, and flu-like symptoms throughout my body," says Claire. She underwent many scans and blood tests, all to no avail. "They medicated me for the pain; none of which did anything, except to zonk me out," she remembers, while adding, "Mike remained very supportive and took me to all my appointments."

Over time, Claire continued to get worse. Her memory became affected and, inexplicably, she began to drop things. There appeared to be no tangible reason for her problems, and of course, no cure was likely without a diagnosis. So she became even more despondent. In 2004, she had to stop working full-time. However, over the years, she has managed to work part-time on a reasonably steady basis. The children are now eight and three years of age. "The pregnancies were just dreadful," admits Claire. "I was bent over like an old woman. I had massive amounts of help in the house, and several au pairs over the years, to help with the children. But I still feel terrible guilt that I neglected them."

Claire became so exhausted she began to neglect her own appearance as well. "I'd always taken great pride in how I looked," she says, "but at times I couldn't even wash my hair because my wrists were too painful." It was a harrowing time; she felt she was letting Michael, the children, and even herself, down. About two years after the accident, Claire went to see a pain specialist at St Vincent's Hospital. "The doctor did a prick test," she recalls. "He put light pressure on 18 specific trigger points throughout my body. When he touched me on those spots, I nearly hit the roof, so I was diagnosed with fibromyalgia."

According to the HSE, fibromyalgia is a long-term condition causing pain all over the body. While the exact cause is unknown, contributing factors may include a genetic predisposition, physical trauma, and viral infections. Claire was urged to do a three-week pain-management course at St Vincent's.

"Psychologists, pain consultants and physiotherapists advised us to take a multi-pronged approach to coping and living life, rather than existing in a depressed state," Claire explains. "The course was excellent for developing cognitive behaviour therapy (CBT) skills and in emphasising the importance of light exercise. They recommend consistency rather than over-exercising, which can leave you in bed for days. They even urge you to do a little exercise on those days when you feel you can't get out of bed."

Doing a job that is meaningful is also considered important. Claire had been working sporadically for Motivation Weight Management in Dublin. She was advised by her trainers on the pain-management course that she needed to work in a more regular, but paced way, as this would provide a lifeline to like-minded colleagues, while boosting Claire's confidence.

"Fibromyalgia strips away your self-esteem and convinces you that you are worthless," explains Claire. "So I took their advice to work about 15 hours a week; if I do any more, I suffer dreadfully. My boss has been very understanding." Claire explains that she started out by helping clients with weight problems by using CBT. "I could really empathise with their [psychological and emotional] pain," she says. "It's like therapy for me, explaining to them that if you have a real desire to change, coupled with perseverance, you can do anything. Doing this work made me feel worthwhile again; there had been periods when I'd been very low, even suicidal."

Today Claire's brief has extended to include research and writing work for the organisation. In time, she came across the work of John Jackson, an immunologist and fitness expert, who had developed a programme for people suffering from fibromyalgia and ME (chronic fatigue syndrome). "A structured exercise programme absolutely does work for me," declares Claire. Currently, she does light resistance training under the direction of Eoin Walsh from Strength For Life, a training and lifestyle-coaching business. "This has made a huge difference to the management of my pain, and to the quality of my sleep," she says.

"These days, I walk every day and I do weights three times a week. CBT is also vital, because if you don't change your negative thoughts, you'll never get well. I constantly work on my thoughts, and through repetition, the messages begin to sink in. I also listen to relaxation CDs and eat good, nutritious food." Claire says while diet is very important, there are occasions when she may not have the energy to prepare healthy meals. So on her "better" days, she makes nutritious food and freezes it. She is also a firm believer in the power of smoothies, made from any combination of spinach, kale, broccoli, avocado, berries, and so on. "When I have one, I can feel the energy coursing through me," she says with a broad grin. "This is all about how you bear your problems."

Right now, Claire, though she's not better, is in a much better space. "I do my best from day to day. Fibromyalgia doesn't go away, but I now have an acceptance of it, and instead of it controlling me, I control it. I have a set of rules and I know my own limitations. I know what I have to do to achieve a decent quality of life. And I will do that for the children, and for Mike, my rock, who has had to bear the brunt of all this."

For more information, email Claire at claire.jackson@motivation.ie

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