Living in hope despite pain and isolation of ME

Myalgic Encephalopathy (ME) has been a part of Leshia Shevchuk's life for the past 11 years. The 24-year-old from Leeds suffers from a severe form of the condition, and is too ill to leave her house.

Plagued daily by intense head and muscle pain, exhaustion and abdominal discomfort, she is forced to rely upon her family – particularly her mother – to care for her.

"I'm very lucky that they're incredibly supportive," she says. "I truly don't know what I would do without them.

"But I'm also aware that my illness changed their lives so much while it was changing mine. My mum is the only one who really knows how bad it gets. I could never begin to thank her enough for the support and friendship she has given me.

"My brother found it hard to cope at times, and would leave the house when he knew I was in agony – it was his way of coping. But he also let me live through him by telling me stories of his nights out, and that gave me some dosage of normality in a strange way."

However, Leshia admits that she feels "very isolated", and is grateful for the support she has received through The Association of Young People with ME (AYME).

"The friendship that AYME brought me has been an absolute lifeline," she explains, "to extremes that only they can understand."

Isolation is a common by-product of ME. As the sufferer becomes more and more unwell, old friendships fall apart as they are unable to keep up with the pace of normal life.

ME is also known as Chronic Fatigue Syndrome (CFS) and Post Viral Fatigue Syndrome (PVFS). Since 1969 it has been classified by the World Health Organisation (WHO) as a neurological condition.

The "fatigue" which forms the mainstay of ME is not the same as that experienced by healthy people. It is a draining, crushing feeling that permeates the entire body. Sleep does not relieve the exhaustion, and exertion of any kind can take days or even weeks to recover from.

No two sufferers are affected in exactly the same way. Among the most common symptoms are nausea, dizziness, sleep disturbance, poor memory and cognitive ability, sensitivity to sound, light and smell, digestive disorders and depression.

Some people with ME are only mildly affected, which means that, with careful management, they are able to enjoy a relatively active and normal life.

Moderately-affected sufferers have to be more careful when partaking of an activity, but are not usually housebound. They can go out a few times a week, and do one or two "main" activities on good days.

Leshia's life is ruled by her illness. "My days revolve around making sure I rest, and I can't even do something small without a huge reaction of severe pain. The smallest things that people take for granted are the things I wish I could do," she says.

"I have to live on painkillers; they do only take an edge off the pain, but that's better than nothing."

She has also tried a number of alternative therapies, such as reiki, acupuncture and herbal medicines.

"Some helped, some didn't."

In the course of her illness, Leshia has developed other medical problems as a result of ME, including degeneration of the nerves in her neck, and stomach troubles.

Her mother, Maria, had to change her job when Leshia first became ill, to be closer to home. She is often awake at night, or sleeps on Leshia's bedroom floor, in case she is needed. Maria admits that every spare moment she has is taken up by being a carer to her severely-ill daughter. "Life becomes centred entirely on the home and its comforts, rather than having a social life," she explains. "Leshia's needs take priority."

She feels that the support available to carers is non-existent.

"You are on your own and have to do the best you can. As a mother and carer for my child it is the most distressing and stressful illness. You cannot see it, there are no scars and yet it totally takes over the body.

"It is a very lonely illness for both sufferer and carer. Friends disappear and don't look you in the eye when asking how things are, and I sometimes wish they wouldn't ask.

"I've spent many hours sitting on the bathroom floor with Leshia's head in my lap, as she could not move for the pain in her head."

Speaking about how ME has affected her emotionally, Leshia says: "Strangely, I'm better for it. I had a lot of time to look over things, come to terms with the illness, accept limitations – but still plan and be hopeful. I'm a stronger person for having this illness, and I think I have become a better person as I'm grateful for just about everything.

"ME has taken a lot away from me, but it also gave me things in return. I'm lucky that I find I can cope very well, laugh every day and appreciate everything."

Having been severely-ill for so many years, she says she doesn't even know what she would like to do when she recovers.

"I truly have learnt to take every day as it comes and be grateful for an easier day," she explains. "Priorities change dramatically when you've been ill so long, in all honesty. It's the smallest things that would make me the happiest."

She fervently wishes that the mysteries surrounding her illness will one day be removed.

Lynn Gilderdale's death, after 17 years of immense suffering with the same illness, had a profound effect upon Leshia and her family. Lynn's mother, Kay Gilderdale, was acquitted of her attempted murder in January after assisting her suicide.

"Even though I didn't know her personally, I was deeply saddened and upset by the whole situation and it hung over us all heavily," she says. "I don't cry much over things anymore, but I cried after reading the papers and news articles that followed Lynn's death. I recall many people in the ME community saying that they wished they'd had the chance to know such an incredible person.

"She stayed strong throughout those years, and I think it's disgusting that the tragic death of a wonderful person has to be the trigger for ME to finally be brought to light properly. Severe ME gets hidden away and forgotten, and its effects can be devastating to the sufferer and their family.

"People still have a bad view of ME, so more needs to be out there for them to learn about the realistic side of the illness," she says.

"The harsh truth is that it ruins lives; it takes away childhoods and restricts every part of a person's life, more than anyone could imagine."

ME Awareness Week runs from May 8-16. For more information, contact The Association of Young People with ME (AYME) at www.ayme.org.uk