Mum’s Amazing Marathon Vow

This article appeared in the Echo.

Article by Peter Bibby, Community Affairs Editor

 

When caring mum Judith Aubrey lines up for this year’s PowerHouse Cardiff Half-Marathon she’s not planning to break any records.

For Judith will be happy just to finish, having pushed daughter Tiffany around the 13-mile route in a wheelchair.

Tiffany, 18 is one of the 150,000 people in the UK who suffers from the chronic fatigue syndrome, ME.

Her condition is so severe she spends much of the day in bed or resting, literally crippled by a total lack of energy.

Judith is her full-time carer at home in Heol Maes Eirwg, St Mellons, Cardiff, and a vigorous campaigner in spreading the message of misunderstood ME..

“There are still many who believe the condition is purely psychological”, says Judith. “And if pushing Tiffany around the Cardiff Half-Marathon course in a wheelchair helps to create awareness of the heartbreak of ME then it will be well worth the effort.”

“One thing is sure, I can’t run for toffee and Tiffany is not a wheelchair athlete – it’s going to be an interesting day.”

Mother and daughter are also using the Cardiff Marathon and Half-Marathon event to raise funds for two charities connected with the condition – the ME Research Group for Education and Support and the 25% Group for ME Sufferers of which Tiffany is a member.

“It’s a cruel and debilitating neurological illness that is often misdiagnosed or not even diagnosed at all,” added Judith.

“The condition is very misunderstood, but it’s hell to live with – for both of us.” 

 

 

Response to Daily Mail Article entitled ‘Written out’ of Soap and Life by ME

By Dr John H Greensmith

The real reason Peggy Mitchell is not going to her son’s wedding, in the latest Eastenders storyline, is not because she disapproves of the girl he’s marrying.

It’s because Barbara Windsor, who plays her, has a dreadful debilitating illness, triggered by Epstein-Barr virus, probably ME.

In real life, hundreds of thousands of people are similarly “written out” of work or school, a normal social life, family engagements and relationships.

As well as fictional reasons being given for their absence and invisibility, sufferers, themselves, sometimes compound the myth by denial that they are really so ill (we see the bright optimism of “bubbly” Babs, in a recent rare public appearance, Mail, 4^th September 2003, but not the after effects of it), in order to avoid derision, isolation, prejudice and so as not to affect future career prospects.

That’s why the true scale of this awful illness remains hidden and misunderstood.

This culture must, and will, change with good scientific research. It’s a shame that so many people must suffer in silence in the meantime.

 

“Keeping up the fight”

Article appeared in CHAT Magazine, 4 Sept 2003

Written by Shirley Clayden

The sun on my face felt fantastic, it had been ten years since I had been able to enjoy being outside. I had forgotten what it felt like.  My severe ME had made me a prisoner in my own home.  It leaves me so weak that I often don’t have the strength to get out of bed.

Sitting on a chair is out of the question because the pressure it places on my spine is unbearable.  Because of that, I have been bedridden for 11 years.

But when my cousin’s husband Nick put a door in my bungalow bedroom, leading into the garden, it opened up a whole new world to me.  I was able to drag myself out onto a rug in the garden and enjoy the fresh air for 10 minutes.

I’ve suffered from ME for 13 years.  It took 18 months for the doctors to work out what was wrong with me.  First of all, I felt like I had a bad case of the flu – permanently.  Aches, pains, high temperature, sore throat, permanent nausea, and the weight was just dropping off me.  By the time I was diagnosed, my symptoms were so bad that I’d had to give up my office job.  With my job, I lost my independence, and it put a huge strain on my marriage.  I can’t even sleep in the same bed as my husband Paul because the pain keeps me awake a lot.

Winter is the worst because artificial light gives me a blinding headache.  I can’t have the bedroom light on, just the landing light.

Paul works away a lot, but when he’s home, he does most of the housework and cooking.  He’s become my carer as well as my husband.  My mum and dad only live four miles away and they’re a great help, too.  I don’t know how I would cope without them.

It is still hard accepting that this is my life, though.  Accepting that there are so many things I’m forced to miss out on, because I’m simply not well enough.  Not being able to go to my sister Wendy’s wedding, or my dad’s retirement party was terrible.  I feel like I’m existing on the fringes of life.  I have a fraction of the quality of life I had 13 years ago, but despite it all I have to stay positive.  I’ve a wonderful family and an amazing husband – I’m very lucky.

Hopefully, one day I’ll get better.   In the meantime, though, I want to get the message across to CHAT readers that ME is not just a figment of people’s imagination, or “yuppy flu”.  It’s a serious neurological and physical problem that affects so many lives.  And I’ll keep fighting it.

 

“Chemicals may have triggered my ME”

Interview with Brenda Barrett, by Tim Green.

Full article appeared in the Bucks Herald, 18 July 2003

An ME sufferer in Aylesbury says she is convinced her illness was brought on by chemicals found in everyday products, including flea collars and headlice treatments.

Brenda Barrett paid for a private blood test recently to determine the levels of organophosphates in her blood. Results showed that levels of tetrachlorvinphos, a chemical found in anti-flea treatment for cats, were almost three times above normal readings.

Mrs Barrett believes she can trace her illness back to 1952 and revealed it took her many years to establish what was wrong with her. Mrs Barrett started to think about possible triggers for her illness and said it may be related to a particular habit she began in her childhood.

“When I was a girl, I never liked lamb but would eat the fat. I later learned that the sheep ingested some of the substances when they were dipped. There was always something wrong with me”.

When Mrs Barrett tried to seek medical help for her condition in later years, she revealed people told her it could be related to her way of life and the stress of looking after her children. She said, “It was put down to a virus. I even went to see a psychiatrist who told me to pull myself together. But I felt so ill and depressed and knew something was wrong.”

When Mrs Barrett was diagnosed with ME in 1988, she continued to investigate possible causes and after some personal research, believes her love of cats and the use of flea sprays and powders over the years could have had a part to play.

She now says she uses only organic products, and says a link between organophosphates and ME is a theory that’s becoming more common. Mrs Barrett stated that she still reacts to certain things and was ill recently after eating non-organic raspberries. She concludes, “I don’t know why this should happen to me – maybe it’s a genetic disposition. More money needs to be put into research and I implore people to take care when using these products.”