All fired up for latest awareness challenge

Lifestyle – Judy Murphy meets Nicola Lavin, a Galway woman spearheading the worldwide Chilli ME Challenge

First it was the Ice Bucket Challenge in aid of research into Motor Neuron Disease. Now things are going from freezing cold to red hot, thanks to Galway woman Nicola Lavin who has spearheaded the Chilli ME Challenge. This initiative is to raise awareness of and help fund research into Myalgic Encephalomyelitis, otherwise known as Chronic Fatigue Syndrome.

Nicola, who is originally from Menlo and now lives in Headford, is one of some 12,000 people in Ireland with ME – it has affected her life since her early 20s.

Nicola suffered from heart failure after giving birth to her son Aaron almost 14 years ago, and after that, she developed a mild form of ME. Medics thought that she had come into contact with a virus which caused her heart problems and also acted as a trigger for ME.

This is a condition which leads the body’s immune system to malfunction, affecting every organ, especially the neurological and endocrine systems. There are many theories about the cause of Chronic Fatigue Syndrome, ranging from viral infections or psychological stress, but there are no definite answers and no single test to confirm a diagnosis.

For that reason it has often been dismissed as not being a real illness with cynics describing it as ‘the Yuppie Flu’.

Nicola acknowledges that, like many others, she would have been dismissive of the illness before it affected her.

“Somebody I knew had it, and I used to think ‘if she got out more or exercised more, she’d be fine’,” she says. But Nicola learned that with ME exercise wasn’t possible because she wasn’t physically able. If she tried to exercise, it simply made her worse.

Listening to this smart, no-nonsense, chatty woman who works as a Medical Science Technician at UHG, describe the impact of ME on her life, it’s perfectly apparent that all her symptoms were real and identifiable. And they were horrible, especially in recent times.

The ME Nicola experienced after Aaron’s birth was relatively mild, allowing her to “work and play sports, but I’d get a relapse for a week or two every now and again, and I found it hard to fight off infections”.

By and large, she coped well back then, but that changed when she got orthodontic work done five or six years ago. Afterwards, she suffered a marked deterioration and her condition went from mild to more severe, which had a profound impact on her life.

“It is extreme exhaustion,” she says of how it affected her. “You have no energy to feed yourself, you can’t stand up, you can’t brush your teeth. You are freezing all the time and the muscle pain is constant.”

For Nicola, the worst part was the impact on her memory and cognitive skills.

This articulate woman, who had spent five years in college, suddenly found she couldn’t remember certain, basic words. It made her job and her life difficult and resulted in total frustration for someone who is naturally chatty and sociable.

A cardiologist sent her to a specialist in myalgic encephalomyelitis, which wasn’t an entirely positive experience. Nicola was given anti-depressants, but they didn’t work because she wasn’t depressed. If she was feeling down, it was because she was exhausted and her life was restricted by her ME. The underlying illness needed to be dealt with, and no medic seemed able to help with that.

“You are going to from doctor to doctor, feeling like you could die and they say ‘there’s nothing we can say exactly is wrong with you’.

For more, read this week’s Galway City Tribune.