Me and my unwelcome visitor: ME (From Gazette)

Me and my unwelcome visitor: ME

7:51am Friday 2nd May 2008 in Features By Vicky Passingham

It is hard to imagine that Sarah Morgan was once a wheelchair-bound invalid.

Today, Sarah comes over as a friendly, confident, hard-working young woman.

But in her teens, ME - also known as chronic fatigue syndrome - took its toll on her body to such an extent it had all but given up working.

While her peers were enjoying going out and having a good time, Sarah couldn't even manage to get out of bed.

Her story, though, is one of hope for the thousands of sufferers of the chronic disabling illness, and is the reason why she wanted to speak about her life with ME (myalgic encephalopathy) in conjunction with ME Awareness Week, which starts on May 11.

"ME will never disappear from some aspects of my life," explained Sarah, "but I have learned to listen to my body and know if I fight it I will make myself worse."

This means if she has a particular hard week at work - she is telephone sales manager for Essex County Newspapers - her Saturdays are a write-off while she sleeps to regain her energy.

Far from feeling resentful, 25-year-old Sarah says work has been her saviour.

"Work helps me to keep a routine and helps me feel better," she explained.

Sarah had been a typical, healthy youngster until she began getting tonsilitis repeatedly at 13. She had them removed the week before her 16th birthday, but the problem didn't go away.

"I never recovered from feeling like I had flu," remembered Sarah, who lives in Colchester.

She was tired all the time and felt completely drained. When Sarah was finally disagnosed with ME at 17, her mother, Jan, was filled with guilt as she had suffered from ME at 27, and thought it was her fault.

With her illness taking an ever-growing toll on her health, Sarah found it increasingly difficult to continue studying for her A-levels at Colne Community College in Brightlingsea. She was tired all the time and found it impossible to concentrate in class.

Her determination to follow her dream of being a primary school teacher, though, meant she carried on her studies at home.

"I got to the point where I couldn't get out of bed. My dad had to lift me out to have a bath. It was a total nightmare," she remembered.

Tiredness, coupled with chronic insomnia, was bad enough for Sarah, but they were nothing compared to the pain she had to endure.

"I call them my gremlins," she explained "because it feels like little creatures are crawling up and down over me under my skin and have long, sharp claws. The pain was awful."

Her 18th birthday was spent in bed, and she needed a wheelchair to get out of the house.

"I just couldn't get my body to work. My brain would say move, legs' but I just couldn't."

Although she was given medication to ease the pain and help her sleep, medical support for ME sufferers was, Sarah says diplomatically, "limited".

She is in no doubt she would not have been able to get through those dark days of "nothingness" without her boyfriend, now husband, Matt, and her family.

Most of her friends just got on with their lives, finding it hard to understand her plight.

"Good friends tried to understand, but had no real comprehension of what I was going through," she remembered.

Sarah got to the point where she was just existing. She didn't even have the energy to hold a hairdryer.

"It was as if my body was broken and had just shut down."

With the help of friends she made through the Association of Young People with ME, Sarah got the confidence to try daily tasks to improve her mobility and gradually got better.

Still following the teacher dream, Sarah went to Kent University, only to relapse on a grand scale after 18 months.

She moved back to Colchester, and after the long process of building herself up, got a job with Essex County Newspapers. She has never looked back.

Sarah still has to live with her "gremlins", as she does have bouts of extreme coldness, but she is a different person to the invalid she was in her teens.

"It has also made me a stronger person," she smiled.

She knows what it is like to be really ill and has a greater understanding of others.

What she would like to see now is a greater understanding of the hell people go through with ME.

ME FACT FILE

ME - Myalgic encephalopathy - also known as chronic fatigue syndrome (CFS) - is a chronic disabling illness with many complex symptoms. The cause is unknown and there is no cure.

About 240,000 people have ME/CFS in the UK.

The illness can last for years. Symptoms vary from person-to-person. They can be severely disabling. The most common are:

• Fatigue: Utter exhaustion, often to the point of collapse
• Pain: Particularly headaches, intense muscle and joint pain and skin sensations such as skin crawling
• Cognitive impairment: Poor memory, mental confusion, difficulty concentrating and thinking. Collectively known as "brain fog".

Up to 25 per cent of people with ME/CFS are either house or bedbound and unable to look after themselves.

For information contact the Association of Young People with ME (under 25) at the website below or call 08451 232389; ME Association helpline 08704 441836, or call 01280 818968.