independent

Monday 14 October 2019

Three Wexford people recount their experiences with chronic illness M.E.

If you are unfortunate enough to suffer from M.E. in Wexford, or anywhere in Ireland, there is nowhere to turn for assistance or help, writes Simon Bourke

There are an estimated 14,000 people with M.E. in Ireland today
There are an estimated 14,000 people with M.E. in Ireland today

There are an estimated 14,000 people with M.E. in Ireland today. For those unfamiliar with the illness, M.E. is also known by the acronym C.F.S. or Chronic Fatigue Syndrome.

Characterised by extreme, debilitating fatigue, sufferers also report flu-like symptoms, muscle and joint pain, sore throat, swollen gland, disturbed sleep, impaired concentration and memory, dizziness and headaches.

Yet some people, many of them medical professionals, contend that it isn't a real illness, that it's a fabric of the imagination.

It's because of those people, those naysayers, that we can only estimate the number of people with the condition in Ireland, not to mention Wexford. There's no specialised clinic in this country, very few consultants, and most people with M.E (Myalgic Encephalomyelitis) quickly learn that, when it comes to their illness, they are very much on their own.

Una Hearne was just 16 years old when she contracted a bout of glandular fever. Or at least that's what she thought she had. But when weeks, and then months, passed without any signs of recovery she knew something was up.

'I never really recovered from it. Yet I was told categorically that, once I was back on my feet, a virus couldn't still be affecting me and so there was nothing wrong with me. But I knew there was, and my friends knew too. I had half the energy of any of my peers, at best.'

Somehow Una, who lives in Rosslare Harbour, managed to muddle her way through college, budgeting her energy and time as best she could, living her life with an undiagnosed condition which showed no signs of going away.

'A friend gave me an article in my early twenties about "Yuppie Flu". It sounded exactly like me. I was so relieved, I knew this was what I had and I finally had a name for it. But every time I went to a doctor to ask about it I was met a wall of derision and dismissal. I would go when I got so sick and tired of being sick and tired but met the same reaction every time. I do not like being patronised so I learned not to use the M.E. label and I only spoke to my close friends about it when I mentioned it at all.'

Now 53, Una has lived with M.E. for all of her adult life, oscillating from one doctor to the next, watching on, helpless, as her condition worsened.

'I couldn't work for most of my twenties but after eight years of being very unwell I did recover enough to be able to work through my thirties and forties. Although most of that time I only managed to work by resting and sleeping evenings and weekends. I gave up trying to have a social life in 2000 as there was no point in going out with great people and having fun if you are too exhausted to actually enjoy it,' she says.

Choosing not to marry or have children, Una threw herself into her work, fulfilling a lifetime ambition and becoming a self-employed life coach. Against the odds and despite receiving no support from those in the medical profession, she was thriving,

Yet in 2015 all that changed.

'My health collapsed at the end of 2015 and I went from doing 30 hours work a week to now only being able to do 3 hours a week on average,' she says.

Nowadays Una spends at least 20 hours a day lying down, barely able to function, so overcome with exhaustion that it's an effort to feed herself, to shower.

'The best analogy for what it's like to live with M.E. is to imagine your energy is a battery which re-charges with sleep. With M.E. your battery will only charge a certain amount, say 15-20%, no matter how much sleep you get. If you use even slightly too much energy you 'crash' and it can take days, weeks or months to recover back to your 15-20% level. This means budgeting the tiny amount of energy you have really carefully. When I'm out I look like a normal person but what no one sees is that I must spend 20 hours a day lying down and cannot do the vast majority of the things I want to.'

Under such circumstances one can understand why Una sometimes finds it hard to stay positive.

'It's very frustrating and depressing not being able to get up and do things, and it's often tempting to give up and just sink into depression. I can really understand why some people do,' she says.

Remarkably Una maintains a healthy attitude towards her illness, reasoning that she simply can't afford to expend the energy involved in being angry. Instead she focuses her energies on raising awareness of M.E. and educating readers through her blog.

'This could shorten my life, but I'm not scared by death, it would be a relief in a lot of ways,' she says. 'My greatest fear is losing my independence and needing care, the horror stories I've heard from other ME sufferers who have tried to get help from the HSE would scare anyone.'

Yvonne Peebles traces her M.E. all the way back to her most formative years, to the age of four and an issue with her throat.

'It started when I was very young, I had throat problems, allergies, memory issues, I was falling asleep in school. The teachers were quite barbaric then, they'd put you out of class,' Yvonne recalls.

Now in her forties, Yvonne has travelled a similar route to Una, one full of frustration and doubt, of having her sanity questioned and her state of mind scrutinised.

'I went to the doctors and told them I was tired all the time. They diagnosed anaemia and prescribed iron tablets. Then they said it was depression. Even when I was settee bound for seven years and I lost my house and my business they said it was just depression. And once you've been stigmatised with mental illness you can't escape.'

Indeed some of Yvonne's experiences sound like something from Victorian times, from the dark and distant past and not a modern first-world country.

'When you tell GPs you have M.E. they ask "How do you know you have that? When was that diagnosed?" My doctor in Summerhill asked for my records and when they got them it said a psychiatrist had put it in my records that I was delusional. If I'd argued I wasn't I'd look mentally ill and they would section me,' she says.

Now living in Tagoat, Yvonne has learned to adapt to her circumstances as best she can, relying on delivery services for her shopping, the kindness of friends during emergencies.

'Managing it is very difficult, but you can manage it to an extent. I had to go to Dublin recently for a doctor's appointment, and the worry was will I able to get home? Will I be able to manage it? The dread of going was exhausting in its own right.'

And yet, at one point in her life, Yvonne's future looked relatively bright. She was coping with her illness to the extent that she was able to run an Education Centre for a large American company in the centre of London, a successful businesswoman in every sense of the word. That feels like a long time ago now though, a world away from her current confined existence.

Her condition has now deteriorated to the extent that she is almost completely housebound with muscle, bone and neurological pain. For many years her only companion was her beloved dog Mags, who served not just as a friend but also helped Yvonne with her balance.

'Mags helped with my balance and socially, when she died I cried for a year. The disease is chaotic. I keep my mind on what I can do.'

At this point in her life, Yvonne says she has come to terms with her illness and no longer feels the need to justify her existence.

'Having M.E. means a life full of acceptance, of learning to let go, and adapting to the continuous lifestyle changes that one has to make,' she says.

At one point in her life Marie Coffey was in the same boat as Una and Yvonne. Completely bed-bound for two years, she was close to giving up, so despondent that death was something she wished for. Yet today, twenty years on, she lives a happy life, one as close to normal as possible under the circumstances.

'I can't use the term "better" because you never get better, it goes in and out of remission. Reserving energy is the main thing. Just recently I had a wonderful weekend but I need to rest and recharge my batteries now.'

Marie describes herself as being 75% recovered, and says that while there is no cure for M.E. the condition can be managed. Attributing her recovery to alternative medicines, Marie swears by meditation, integrated energy healing (IET) and a variety of other non-conventional treatments.

An energy healer herself, Marie charges a minimal fee for her services and believes there are many unscrupulous practitioners out there only too happy to prey on desperate people.

'It's appalling that there's people out there who charge €60-80, they thrive on vulnerable people and say "I can cure you" when they can't. You will pay anything if someone tells you that.'

Yet with so few GPs unable to provide assistance, answers of any kind, Marie says its no surprise that M.E. sufferers clutch at whatever straws are within reach.

'90% of GPs are a waste of space when it comes to M.E. This is not a psychiatric illness, it's a neurological illness. And the doctors will tell you it's all in your mind, when you're very ill you're vulnerable and you will listen to what they tell you. Doctors need to be told, "listen to your patient".

Marie hosts a monthly meeting in Enniscorthy for M.E. sufferers and states that it's a self-help group rather than a support service and one where 'it's not all doom and gloom'. However she believes that those with the illness need so much more than they are currently getting.

'I'd love to see a clinic in Ireland for people with ME, with a consultant in there to treat them, they have them in the UK and US, people who specialise in this illness and can provide expert treatment.'

These sentiments are echoed by Fianna Fáil Councillor, Lisa McDonald, who has seen first-hand the disdain towards those with M.E.

'As a litigator I've come across it in court and the judges tend to throw their eyes to heaven when they hear it mentioned. We need a dedicated M.E. centre in Ireland and a consultant so people can be diagnosed,' says the councillor.

And Cllr McDonald believes the creation of a clinic would benefit the country as a whole.

'This would be a cost benefit to the country if we can understand the condition and help people in a positive way.

'They want to work but can't. If we can assist these people with ME they wouldn't feel like they're being ignored. Instead of throwing people on disability we should be diagnosing them and treating them.'

Wexford People

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