Amy so tired of coping with ME
AMY Paddick was top of her class and heading for a law degree when she was struck by a debilitating disease which left her unable to go to school and constantly tired.
AMY Paddick was top of her class and heading for a law degree when she was struck by a debilitating disease which left her unable to go to school and constantly tired. Today the 15-year-old is desperate to succeed yet continuously frustrated by her own body, as REBECCA LEFORT found out.
JUST over a year ago this 15-year-old was a high-flyer, now she considers it an achievement if she manages to stay awake all day.
Since she was diagnosed with ME, also known as Chronic Fatigue Syndrome, in February 2006 Amy Paddick has lost not just her energy but also her childhood and much of her self-confidence.
And because the disease, which causes extreme and sometimes debilitating tiredness, is so little-understood the Deben High School student has also faced a battle to educate some of her friends about its affects, leaving her feeling isolated.
Curled up on her sofa - a position she is all too familiar with - at the home she shares with her mum, Claire, dad Gary, teenage sisters Laura and Sophie and three-year-old brother David, in Kirton Road, Trimley St Martin, Amy, said: “When I first went off school there were rumours that went round school about why I was off that were very imaginative, including was I pregnant.
“I have lost a lot of friends. They've dropped me because of it.
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“I had a large group of friends and only two stayed by me. There was a communication breakdown because I wasn't in school.”
In fact some of her friends even asked her if the isolating disease, which she thinks she developed after catching a viral infection and experiencing pain in her side, was catching.
Now, more than a year after she discovered the terrifying news about her condition, Amy is still unable to attend school on a regular basis and so the Year Ten student instead has a home tutor who visits her for one hour a day, Monday to Friday.
The tutor helps Amy with English lessons while she carries on with art at school and teaches herself other subjects at home, something she admits she sometimes struggles with.
And despite the best efforts of everyone involved Amy's ME has meant she has been unable to keep up the high standards she used to set herself in her education and the situation is so demoralising for her that she is considering taking anti-depressants.
Amy said: “I had wanted to study law but now I don't think that is likely any more.
“Now I think I'd like to do journalism so I haven't lost my ambitions - just changed them.”
For now Amy will continue with the same routine of going to school once a week, with the rest of her time filled with home tuition, home study, trips out with her mum and sleeping.
She does not exercise because even one day of strenuous effort can result in three days in bed afterwards.
But she is also painfully thin, another sign of the problems that are affecting the teenager who used to feel just like everyone else but is now so alone.
However when she is feeling positive Amy still manages to remain optimistic about the future.
She said: “Some people get over it completely and a lot of young people recover.
“I was told with me it would probably last one to two years but it's not getting better at the moment.
“Perhaps all this has made me a better person - it's been a valuable life lesson.”
The mum's view
Claire Paddick, Amy's mum, said watching her eldest daughter go through such a traumatic experience had been horrid for all the family.
She said Amy's siblings, Laura, 13, Sophie, 11, and three-and-a-half-year-old David, found it frustrating that their sister was often tired; restricting the type of activities they could enjoy as a family.
Mrs Paddick, 39, said she had been lucky because she was self-employed which meant she was able to spend a lot of time with Amy during the day, rather than leaving her completely alone in the house.
She said: “It's been hard for everyone.
“It has restricted the holidays we can take and sometimes it's hard for the other children not to resent the situation a bit.
“Plus other members of our family don't understand how it affects her - it's hard for people to see that if she overdoes it one day she'll be whacked out for the week.”
But Mrs Paddick stressed that she and her 40-year-old husband, Gary, were very proud of their daughter.
She added: “She tries so hard and either gives 100 per cent or nothing.
“Like lots of people with ME she can't cope when she doesn't do really well which is why it's been hard for her to come to terms with the fact she might not do as well in school as she had hoped.”
This week is national ME Awareness Week and the Association of Young people with ME (AYME), the children's charity which provides support and advice for sufferers, is highlighting the impact the disease has on youngster's education.
According to the charity one third of children and young people with ME said they received no education, 18 per cent were in school part-time, 19 pc said they were receiving home tuition, 17 pc were in college and 13 pc were participating in a correspondence course.
AYME's chief executive, Mary-Jane Willows, said: “There are some great examples of good schools supporting pupils with ME, but there are also some heartbreaking stories of children being bullied by ignorant students, being accused of school phobia by disbelieving educational professionals, parents being pressurised to 'drag' their children to school when they are to poorly to walk or even sit upright.”
N ME (Myalgic encephalomyelitis) is also known as Chronic Fatigue Syndrome and sometimes Post Viral Fatigue Syndrome.
N It is a neurological condition that brings long-term tiredness that does not go away with sleep or rest and affects your daily life.
N The fatigue is mental as well as physical and some people describe it as overwhelming.
N Anyone can get ME, although it's twice as common in women as in men.
N It usually develops in the early 20s to mid 40s but children can also be affected, most commonly around the age of 13 to 15-years-old.
N It affects around 240,000 people and it is estimated that as many as 25,000 young people and children have ME.
N There is no cure so treatment tends to focus on easing the symptoms
N Famous people with ME include round the world sailor Clare Frances, film director Lord David Puttnam, Superwoman writer Shirley Conran, Esther Rantzen's daughter Emily Wilcox, actor Gayle Hunnicutt. Florence Nightingale also suffered from ME.
SOURCE: ME Association