ME Awareness Week - One youngster tells her story (From Wilts and Gloucestershire Standard)

ME Awareness Week - One youngster tells her story

WHEN Olivia Goddard caught Glandular Fever at 13-years-old she had no idea how her life would be turned upside down.

From being top of her classes in school and going out with friends at weekends she no longer had the energy to even get out of bed.

For an entire year Olivia, who lives in Down Ampney, was in and out of hospital while doctors tried to find out what was wrong.

She suffered severe headaches and muscle pain, was very sensitive to light and noise, and all the time felt utterly exhausted.

Eventually she was diagnosed as having the illness Myalgic Encephalomyelitis (ME).

Classified by the World Health Organisation, as a complex neurological, not psychiatric illness, the chief medical officer reported that its long-term effects on health could be considered alongside Multiple Sclerosis and Motor Neurone Disease.

On Tuesday Olivia turned 18, and while many teenagers of that age are making preparations for university she has had to come to terms with taking life at a different pace.

"You have your life planned out and then suddenly you can't fulfil your goals," she said.

"You have to change them because you don't know how long you're going to be ill for.

"I have gone from being bedbound to being able to go to school for an hour and ten minutes each day.

"But every time you do something you have to think about the consequences, considering how it's going to affect you, and really pace yourself."

Through home-tutoring Olivia was able to take three GCSEs and, having moved from London to Gloucestershire two years ago is currently studying English Literature at AS Level at Farmors School in Fairford.

Every day is centred around going to school but difficulties with concentration and memory make it hard to focus for long periods.

With exams looming frustration increases because while Olivia knows she has the academic mind the physical and mental exertion is often too much.

She said: "You just come to accept that after a while you're not going to get anywhere by being frustrated and being annoyed all the time.

"You just have to think about the future and again adjust your goals. You have to see what you have achieved.

"I never thought a few years ago that I would feel as well as I do today." Feeling isolated has also been one of the toughest elements of the illness to deal with.

It's been important for the family to establish links with the national ME centre in Essex, and Olivia is also part of the Association of Young People with ME (AYME).

"Because you're not going to school or meeting friends at weekends it's hard to maintain contact," she said.

"And it's hard for your family when you're severely affected.

"My mum had to leave her job and look after me everyday, my brother had to keep the noise levels down."

At the moment Olivia, who hopes to go to university and study creative writing, is defined as an ME sufferer 60 percent.

This means her ability to function is limited to 60 percent of what a normal healthy person can do.

For more details on AYME call the helpline on 08451 232389 or visit www.ayme.org.uk

* This week is ME Awareness Week.

* Yesterday (Wednesday) a number of ME groups were due to present a petition to 10 Downing Street requesting 'urgent funding of research into the underlying physical causes and underlying disease process of ME by specialists in physical disciplines such as endocrinology and neurology.

* ME stands for Myalgic Encephalomyelitis.

* It is often referred to as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).

* There is no known cause of ME as yet, although in young people it most commonly follows persistent viral infection.

* There is no cure.

* The Association of Youth with ME estimates there are 24,000 children with ME in the UK. They're youngest member is 5-years-old.

* The majority of people affected are in puberty, between 11 and 14 years.

* ME is typically triggered by some form of infection like, for instance the flu, tonsillitis, glandular fever or hepatitis.

* The main symptom of ME is utter exhaustion to the point of collapse which is not relieved by sleep.

* Other symptoms include muscular and joint pain, sensitivity to noise, light and changes in temperature, headaches, disturbed sleep patterns, concentration problems, nausea and dizziness.