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Real life: the long goodbye

Thursday 11 March 2010

Criona WilsonThe Irish Independent newspaper has an article about Criona Wilson (pictured) and her daughter Sophia Mirza:

Real life: The long goodbye

Devoted mum Criona Wilson helplessly watched on as chronic ME took the life of her daughter Sophia. Now, she is fighting to raise awareness about this debilitating illness

By Sarah Spendiff
Monday March 08 2010

Criona Wilson heard the old war song in her head, Now Is The Hour We Must Say Goodbye, and knew her daughter, Sophia, was about to die. The former midwife from Ennis, Co Clare, had been nursing her youngest through years of chronic ME, watching as the disease stole every part of her, bit by agonising bit.

She had not walked, talked, sang, laughed or basically lived for the past few precious years.

Her condition deteriorated so quickly, that what started as a weekend visit to her mother ended in this -- Criona, standing outside Sophia's bedroom door, listening as her beloved daughter's breathing slowed to a stop. She was only 32.

How could it be that an illness, once thought so benign as to be dismissed as 'yuppie flu' and to affect 'malingerers and hypochondriacs' be so cripplingly destructive?

A little-known fact is that of the estimated 12,000 ME sufferers in Ireland, a quarter of them will be so ill they can barely move, eat or speak.

Perception

In the UK, the 25pc ME group offers support and campaigns for more biomedical rather than psychological research. It is precisely because so much emphasis is placed on ME being a psychological illness that Criona is keen to speak out about her daughter's death.

The World Health Authority (WHO) has classified ME (myalgic encephalomyelitis) as a neurological disorder, which puts it in the physical category.

Back in 2002, the UK's chief medical officer, Liam Donaldson, stated that it was a serious condition that needed further investigation. That should have been the end of the debate yet virtually no resources have been put into finding a biological cause or treatment.

"It just doesn't make sense to me that Sophia, who was so obviously physically ill, could be treated as if she had a mental illness," says Criona.

Like many others of her generation, Criona relocated to the UK when she was younger. She trained to become a nurse and then a midwife, married and had four children. Sophia was her youngest.

After she died, a post-mortem revealed nothing initially, but further examination showed that the sensory part of her spinal cord was inflamed.

Yet during her illness Sophia was told to snap out of it, her mother was accused of making her daughter sick and Sophia was threatened with being sectioned. In 2003, this threat was carried out when police and social workers broke down the door of their home and carted her off to a mental hospital.

The devastating affects of ME hit headlines last year after the tragic death of 31-year-old Lynn Gilderdale, who had been bed-bound and tube-fed for years due to ME.

When her mother, Kay Gilderdale, was arrested and subsequently charged with her attempted murder, the news of how severe the disease could be and what carers go through went global.

Kay has since been cleared by the courts and her actions, of crushing drugs and putting them into Lynn's feeding tube, were dismissed by the judge who said she was clearly a devoted mother.

To help your child to die, having devoted your life to their total care, must be the ultimate sacrifice for any parent, and unimaginably painful. Although not implicated in a suicide agreement with Sophia, Criona says some people were concerned for her. Why?

"Because Sophia couldn't eat or drink and I didn't call a doctor, perhaps I could have been carted off to the police station to answer questions, but it didn't happen like that.

"Sophia begged me not to call a doctor for fear of being in a mental hospital again and I'm glad I honoured that wish.

"When she was alive I did everything I could for her, so now I am at peace with her dying."

Anguish

Sophia is the first and last person so far to have officially died of ME.

She was initially diagnosed in 1998 just after she finished her art degree in London. She tried to carry on as normal for a while but as her illness progressed it became increasingly difficult to leave her home.

By the September of the following year, during what was to be a weekend visit to her mother in Brighton, Sophia collapsed.

"She fell on the sofa and could barely move. Despite being a nurse, I didn't know much about ME at the time, nobody did.

"If you feel unwell and run-down you think you've been over-doing it and should pull yourself together.

"I know Sophia thought that at first and tried to do too much, which is why she became so ill.

"She got flu the year before and also had two car crashes and I don't think her body properly recovered because she didn't give herself time to get over it."

Sophia's condition deteriorated to such an extent that she could only lie on her right-hand side, light hurt her eyes and sound was too much of a stimulus for her so conversations had to be kept very short.

Then, after nearly two years, there were slight signs of improvement.

"By then, I'd given up on the doctors, most of whom only saw ME as a mental illness and were no help to us.

"Sophia's doctor wanted her to go to an ME clinic but Sophia begged me not to let them take her there.

"That's when the doctors got social services involved who decided Sophia had to get better or else they would section her.

Once the family realised that the doctors would carry out the threat of sectioning Sophia, they requested she instead be taken to an ME clinic as the lesser of two evils but were told it was too late.

"That was Sophia's tsunami. Every ounce of her strength went into keeping herself alive. It was the beginning of the end.

"After 13 days we got her released through going to a tribunal. Thankfully the judge supported us."

Sophia was back in a blacked-out bedroom, pads on her eyes, with no visitors.

Worse

Even when Criona walked into the room it made Sophia worse, electrical equipment somehow made her worse, she could barely speak and food was a carefully laid-out operation. Criona says: "It would take maybe 15 minutes to prepare the food but it could take her six hours to get over the effort of eating it.

"As a nurse I've looked after cancer patients and people dying, but I've never seen anyone as sick as Sophia."

How did Criona survive this time, seeing her daughter reduced to existing in a dark and painful void? She looks me in the eye; there are no words.

"I have learnt nothing from the easy times in my life, but the hardship and the difficulties, I've learnt big time from them.

"Sophia lived for two years and four months after that. Every day I looked for some improvement, with ME you just never know.

Refuse

"Slowly she started to refuse the food and in her last days drinking was too much for her, too. I often asked if she wanted a doctor, but she was clear she did not."

As her breathing slowed to a stop that day in November 2005, Criona was able to touch her daughter for the first time in years.

"Sophia longed to be touched, she was so lonely. She loved people and company and to laugh.

"She was so beautiful but completely unaware of it."

For Criona, who dedicated so much of her time to her daughter, it's important to continue on her legacy.

"For Sophia, I want to get the message out on how to treat severe ME patients. I told Sophia her story would help others and she said 'then it's all been worth it'.

"That's the kind of person she was."

For more information:

  • www.sophiaandme.org
  • Irish ME/CFS Association 01-2350965 info@irishmecfs.org
  • Irish ME Trust Lo-call 1890 200 912 info@imet.ie

- Sarah Spendiff

Irish Independent

The article originally appeared here.

Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.

 


 

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