April 20 2014 Latest news:
Wednesday, January 2, 2013
Teenager Laura Bizzey had muscular dystrophy but when she went on to develop ME things became especially difficult. She told SHEENA GRANT how she got her quality of life back
IT’S the Christmas holidays and, like many teenagers, 16-year-old Laura Bizzey is looking forward to taking a little time off from her studies to socialise with her friends.
Except that Laura’s life is different to that of most teenagers. She was diagnosed with muscular dystrophy at the age of eight and by the age of 12 had developed a chronic fatigue/ME-type illness as well.
The muscular dystrophy causes progressive weakening of her muscles and the ME left her so lacking in energy that she was often confined to bed for large amounts of time, making it difficult for her to maintain crucial mobility.
She clearly remembers her lowest point, which came in the summer as she sat at home, in Snape, feeling more ill than she ever had before.
“I did not feel I could go on any more,” says Laura. “I was fed up with feeling so awful.”
A few weeks earlier Laura and her mum, Katie, had been given an EADT article about something called the Lightning Process, a training workshop run over three consecutive mornings where people learn a technique aimed at giving control over an automatic, unconscious system – the fight-or-flight response.
The thinking is that when the fight-or-flight response is returned to appropriate function, we enjoy associated physical benefits, energy and sleep.
The process is said to be able to help a variety of conditions, including chronic fatigue syndrome, ME, depression, anxiety, irritable bowel syndrome and multiple sclerosis.
Laura and Katie had been wondering whether the course might work for her ME symptoms but were still in two minds about signing up.
“Sitting at the kitchen table that morning I just begged my mum to make the call,” says Laura. “I couldn’t go on as I was.”
Within weeks Laura had completed the course near Sudbury run by former investment banker Eamonn Driscoll, who became a Lightning Process trainer after initially learning the technique to help recover from illness himself.
It may not work for everyone but in Laura’s case – and the others on the course with her – it has made a huge difference.
“It is re-training your brain to take out unhelpful thoughts and feelings,” says Laura. “Constant practice is the key. As soon as you get a negative thought you have to interrupt it. It’s like opening up a new pathway in your brain.”
Katie can hardly believe the difference in her daughter.
Before taking the course, Laura spent large amounts of time in bed and had been unable to do any studying towards her GCSEs for months.
“I noticed changes in her quite quickly after she had done the course,” Katie says. “She was getting up, for a start, and joining the real world again. Before she did the course she couldn’t even go down the garden. That’s all changed.”
Laura still has muscular dystrophy, of course, but both she and her mother say that, now the debilitating ME has gone, she has quality of life again and can use what muscle function she still has – vital to help slow the progression of her illness.
Laura has a type of muscular dystrophy called minicore myopathy. It affects her spinal muscles, legs and lung function, meaning she only has 30% lung capacity and sleeps with a machine to help her breathe. She can’t run or jump and negotiating stairs is difficult, but Laura has always been a fighter and, along with her mum, has raised tens of thousands of pounds for the Muscular Dystrophy Campaign. The charity nominated her to be an Olympic torchbearer and, despite her illnesses, she managed to carry the flame 300 metres when it came to Suffolk in July.
Katie believes the shock of Laura’s muscular dystrophy diagnosis eight years ago could have triggered the ME.
“After she was diagnosed, the ME started to kick in a while later,” she says.
Laura continued at school until a year ago, when she left to be home-schooled and continue her GCSEs via distance learning.
“It was getting more difficult at school because of my muscular dystrophy and having the ME didn’t help,” she says. “But when I left school and was able to relax a bit more the ME really took over. Once I left school I could stop trying to cope with it and I could stay in bed if I wanted to. I was exhausted by 11am. It just wasn’t right. I had no quality of life whatsoever.”
By April Laura was no longer able to study and had given up arranging social events for fear she wouldn’t be able to keep them.
“There was no way I could even have gone shopping with my friends,” she says. “Tiredness was the main thing. I would find it hard to even sit in a room with people and talk. My head was all whoosy and I felt exposed.”
“We didn’t know where the ME started and the MD stopped,” says Katie. “She lived in bed. It was worrying and depressing. We would suggest doing something nice and she would say, ‘No, I’ll just go to bed’. She had no energy to even get dressed.”
Now that Laura has learned the Lightning Process techniques, Katie feels she has got her daughter back.
“Laura is quite funny and, because of the ME, she had stopped being funny,” she says. “I had been used to living with this person who was quite witty and that has come back. It is how she should be.
“Because of the MD it is essential Laura exercises and is able to go for walks. I was so worried that with all those months when she was sitting around with ME she was losing her mobility. Lying in bed day after day was not good. When she was ill like that she could never have taken any exams and could have ended up without any qualifications and unable to do anything with her life.”
Laura still uses the techiques she learned on the course, but only intermittently these days.
“Occasionally I will use it if I’m feeling a bit tired and, of course, I still have the MD, but I try not to let that stop me from getting on with what I want to do,” she says.
Now, instead of having to turn down invitations or take to her bed for days afterwards if she accepts them, Laura can live more as befits her age.
She is a member of a musical performance group at Snape Maltings and says it is so much more enjoyable without having to worry about how her ME will affect her.
“In March I did a performance with them and went to bed for four days afterwards. Now I don’t have to do that. And I’m able to keep up my friendships better.”
Since learning the Lightning Process she has also been able to resume studying and is due to take some GCSEs in January and more in June.
She would like to perhaps go to college and carry on with the Spanish she is learning, maybe even working as an interpreter in the future.
“Doing the course with Eamonn gave me the tools but I had to want it to work and put the work in,” she says. “Doing the Lightning Process has given me my quality of life back.”
For more information about the Lightning Process and courses run by Eamonn Driscoll visit www.thenavitaspractice.co.uk, email firstname.lastname@example.org or call 07976284715