‘My life has been turned upside down’

SUFFERER Beth Yates, 14, resting at her Waterlooville home, and inset, with her father Tony Yates. Picture: Malcolm Wells (122098-2386)
SUFFERER Beth Yates, 14, resting at her Waterlooville home, and inset, with her father Tony Yates. Picture: Malcolm Wells (122098-2386)
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It’s a condition that is often brushed under the carpet as a person being lazy or overly tired.

But the truth for people suffering from myalgic encephalomyelitis (ME) is a world away from that.

SUFFERER Beth Yates with her father Tony Yates. Picture: Malcolm Wells (122098-2386)

SUFFERER Beth Yates with her father Tony Yates. Picture: Malcolm Wells (122098-2386)

And today, young Beth Yates, wants to share her story to banish the myths surrounding ME.

Beth, of Forest End, in Waterlooville, is 14 and suffers from ME, which is also known as Chronic Fatigue Symptom (CFS).

Speaking out, she tells of her day-to-day struggle living with a condition that has taken over her life.

She says: I want to get the word out about a debilitating and life-changing illness.

‘That illness is ME. Fibromyalgia (FM) also comes hand in hand with ME.

‘People really need to be made aware of this illness.

‘Many people believe living with ME or CFS is simple – that we are just a little tired or in just a little bit of pain but it is so much more.

‘Although the disability is not classed as life-threatening, it can actually lead to other illnesses which can then kill you – it is most definitely life-changing.

‘My life has been turned upside down. The symptoms I endure are cruel and terrible.

‘I am in excruciating agony every day, non-stop.’

Beth first started showing symptoms in December 2010 when she started getting headaches and felt tired.

Soon she was unable to control when she would fall asleep.

‘I was off school from last January to March because it was so bad,’ adds Beth.

‘Then my right shoulder started to hurt, which spread to my elbow and wrist.’

Eventually the pain spread across Beth’s entire body, making it absolutely agonising to move.

Despite multiple visits to A&E, Beth’s ME wasn’t diagnosed until March last year.

It can last for years. For most people, symptoms improve over time, with many people making a full recovery and returning to work and normal activities.

Others may have symptoms that persist for long periods.

But with no known cure, life becomes hard for sufferers.

Beth says: ‘To start with a lot of people could be suffering daily without any idea what is happening as CFS or ME goes undiagnosed in people for years.

‘Getting diagnosed with ME or CFS or FM is practically impossible if you present your symptoms to a doctor who is ignorant.

‘It took us three, maybe four months to get a diagnosis. Yet I’m aware of people who weren’t diagnosed for six years.

‘The fact that people could be debilitated for years with no idea what is going on, or with even a misdiagnosis is shocking.

‘Some days I am unable to even sit up in the morning, sometimes it even takes me hours to merely open my eyes.

‘Then you have the memory loss – the “brain fog” so a lot of the time I can hardly string a sentence together.

‘But that’s not all, you have dozens of other symptoms that honestly I cannot even list.

‘But although ME makes your life hell, the people who sympathise with what you’re going through or even acknowledge it is a real illness are far and few between.’

Beth’s aim is to get schools, businesses, medical professionals and general members of the public to understand what the condition is and to gain better support.

She says: ‘Trying to find someone in the medical profession who will give you a little slack is somewhat impossible, but I am lucky and have found doctors who agree that what I am going through is horrible.

‘The looks and comments I get from friends, and even family are outrageous.

‘They refuse to believe what I have is real. It doesn’t kill you straight out so you must be putting it on.

‘Also, if you’re my age and are still in any type of schooling, the torment doesn’t end at the illness and medical profession.

‘If you are suffering badly from CFS or ME another major symptom is the fact you are unable to concentrate for any length of time at all.

‘So therefore school is pretty much out of the question, but once you get a little better in gradual steps you may be able to manage half an hour of some sort of work a week and then obviously you progress as and when you can.

‘But for many sufferers getting any sort of support is a massive ordeal.’

Beth goes to Purbrook Park School, in Park Avenue, Purbrook, and says they have helped her a lot.

They provided her with a home tutor when she was unable to get to school, and have now helped her integrate back into school life with an adapted timetable and lesson plan.

‘But many schools would not be so accommodating,’ she said.

‘People suffering with this disability could be just not going to school because they cannot manage or even being made to go to school when in fact it is only making them worse and eventually they will get so ill.

‘So basically people, doctors and schools need to know about ME, CFS and FM.

‘They refuse to listen but maybe if it is in the paper people will begin to believe what we live through isn’t imaginary.’

Beth’s father Tony, 58, is her full-time carer.

He says: ‘I had heard of ME, but didn’t realise how bad it can be.

‘When everything was happening we had to take a step back and take everything in.

‘It was a complete shock for me and my wife Jane.

‘Sometimes it’s saddening to see her in pain and she hasn’t got a normal life like a young lady like her should have.’

CHARITY HELP

Beth says her and her family have been helped by charity Association of Young People with ME (Ayme).

‘I don’t know how I would’ve coped without the charity Ayme,’ says Beth.

‘Some family members don’t have a clue and it can be lonely.

‘It’s hard to explain the condition, which is why I hope this will help people understand.’

The charity aims to provide emotional and practical help, support and information to children and young people with ME.

It also provides a hub for people suffering from the condition to meet and talk.

And the charity wants to raise awareness and understanding among health, education and social care professionals, alongside the public.

For more information go to ayme.org.uk or call the National Help and Information Line on 08451 232389.