20th Sep, 2018

ME sufferers speak out about their battle with the 'invisible illness'

Laura Kearns 9th May, 2018 Updated: 9th May, 2018

THIS week marks ME Awareness Week, culminating in a campaign day called ‘Millions Missing’ in cities across the world. Leamington and Stratford Observer deputy editor Laura Kearns is using this as a chance to speak out about her battle with the illness and talk to others with the condition.

FIVE years ago I ended up in a club I did not want to join, and I am still hoping to leave.

I am one of the some 250,000 people across the UK diagnosed with Myalgic Encephalomyelitis, ME for short, or more commonly known as Chronic Fatigue Syndrome.

There is no cure and some patients never recover.

I was diagnosed at 25-years-old after a holiday to the South of France.

I felt ill for months after returning to the UK and doctors found I had recently suffered glandular fever and viral meningitis which had been triggered by mosquito bites I suffered abroad. These led to ME, a post-viral illness.

The condition has varying symptoms in each patient, but each is united through their debilitating tiredness. Mine is often accompanied with crippling headaches, light sensitivity and ‘brain fog’.

All I can do is pace myself – kind of like a battery, when I run out of energy it can take days or even weeks to feel better. I also rely on strong painkillers and multiple supplements, and have lots of support from those around me.

I am also a member of the Mid-Warwickshire ME Group, made up of 45 sufferers who share the latest research and news via emails and for those who feel well enough, meet for coffee.

A fellow member is 62-year-old Roy Galway from Stratford.

ME affects four times more women than men, something which Roy says can be extremely isolating.

He has suffered from the condition for 27 years and during that time the successful entrepreneur has been forced to give up numerous businesses due to the toll they have taken on his health.

This includes closing down a classic American car restoration business which led to nine people losing their jobs.

Roy – who had a heart attack last year which was blamed on his inactivity due to ME – said: “The condition came on over a period of just weeks. I had no energy. I tried not to let my employees see me crashed out in the office. My doctor diagnosed me with post viral syndrome – as it was known back then – and told me i should take six months complete rest, but how could I do that I thought, employees and a thriving business? In the end the illness forced me to fold up the company leaving all of us out of work.

“I have continued to try to work for myself in a very small way, but as the years have progressed its become enough for me to just do the very basics of everyday living.

“My ME has lead to divorce, bankruptcy, loss of friends, family and relationships and has completely ruined my life over the past 27 years. The most frustrating part is that I look fine, so people have no idea that I am suffering from a plethora of horrible disabling conditions.

“Another issue is that the future looks so bleak, with there being no ME cure on the horizon. All I can do is ‘manage’ the symptoms and live with it.”

Another one of those affected is 38-year-old Claire Hawk from Leamington who has had ME for around two years.

The former science teacher was forced to give up her job due to her health and has since taken up a part-time job in an office where she can work around her illness.

She plans ahead to ‘budget’ her energy and even uses a fitness tracker to ensure she does not do too much each day.

Claire, who lives with her husband, told the Observer: “The hardest thing about having ME is explaining it to others, and fearing that people will think you’re lazy or not trying.

“It is tough having to cancel on friends and family so often. The trouble is, when I’m really poorly no one sees me.

“Having ME has taught me patience and self-compassion – I don’t think of it as a battle, it’s just how things are. I need to manage my condition as best I can, and forgive myself if I don’t always get it right.

“I do worry that I could get worse, so I try not to think about the long term future too much. I appreciate what I have, and I am hugely lucky that my friends and family are tremendously understanding and supportive.”

One thing sufferers agree on is that the condition leaves many people removed from everyday life and is an ‘invisible illness’.

This will be highlighted in cities across the country on Saturday (May 12) at an awareness-raising event called ‘Millions Missing’ which campaigns for equality, treatment and research. Those who are too poorly too attend or ‘missing’ instead send a pair of shoes with a note about how ME has affected their life. Some send trainers, heels or even ballet shoes.

A member of the Warwickshire group, who asked not to be named, said: “I believe ME is one of the most invisible illnesses there is. It is the nightmare that never ends, the groundhog day.

“The ‘thing’ with my condition is that I look healthy. To clarify, I look healthy when people see me. Because I only see people if I am having what is euphemistically called a ‘good day’. They have no idea how difficult my struggle to survive is.”

Founder of the Warwickshire ME Group, Julie Heptinstall said the group can be a lifeline for some as the condition can make them feel very alone.

She told the Observer: “ME is very isolating. It is unseen, and people are usually only seen out and about when they are well enough, but not seen when they are too ill to even climb the stairs at home, for example. Many people have to choose between staying in work and having no social life, or moving onto benefits, which is increasingly difficult these days.”

The group meets once a month in Leamington. Call 01926 512340 to find out more.

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