Life

'I'm a normal girl with an extraordinary condition' says Co Derry narcoleptic Christine

Struggling with tiredness is a daily battle for Co Derry girl Christine Donaghy who suffers from narcolepsy

This picture of Christine on a 'good day' proves you don't have to look 'sick' to have a disability

IMAGINE starting your day thinking someone had tried to murder you or that you had witnessed a terrorist attack? Sadly, this is a daily occurrence for 27-year-old Christine Donaghy from near Claudy, Co Derry, who likens her dreams to a film directed by Steven Spielberg.

"There's been many times where I have thought someone is breaking into my house as my brain generates the noises for the door turning, people coming up the stairs and screaming at me," she explains.

"People have said to me 'but sure it was only a dream', but you combine the visual hallucinations, noise, smell and touch that comes with these nightmares and they impact on how you feel after."

Christine is one of an estimated 100 people in Northern Ireland who suffer from narcolepsy – a chronic neurological disorder caused by the brain’s inability to regulate sleep-wake cycles normally.

Frightening hallucinations are just one symptom of the condition, along with interrupted night-time sleep and multiple experiences of sleep paralysis every night, where although still awake and fully conscious, the person finds they cannot move.

Not surprisingly, narcolepsy also causes uncontrollable sleepiness during the day. If the urge becomes overwhelming, patients fall asleep for periods lasting from a few seconds to several minutes.

For Christine, these involuntary sleep episodes have even included falling asleep standing up in a nightclub in Ibiza. More worryingly, she has has also fallen asleep with the oven on.

"One time my apartment filled with smoke and I was awoken by my neighbour banging on the door. I had been out cold and she was panicking that I wouldn't wake up," Christine recalls

"When I go to sleep, I slip into REM sleep, which is the poorest quality sleep where you wake up completely unrefreshed no matter how many hours you try to get.

"Therefore, during the day, my body is calling to collect the sleep debt it is owed."

Narcolepsy generally starts to appear in a gradual way between the ages of 10 and 20, although it can happen at any age. It is estimated that 1 in 2,000 people suffer from narcolepsy, but that only 25 per cent of those have been properly diagnosed.

Whilst incurable, with proper diagnosis, medication and lifestyle modifications, suffers can manage the condition and lead satisfying lives.

Christine's mother first raised concerns to her GP when she was a young teen, but blood tests ruled out anaemia and she was simply told her tiredness was indicative of a growing teenager.

Despite battling increasing tiredness and difficulty with staying alert in class, Christine achieved two A-stars and one A in her A-levels and went on to graduate in Law with Politics at Queen's University.

In the 2001 comedy film Rat Race, Rowan Atkinson plays the role of a narcoleptic Italian tourist. Whilst the character produces many funny moments in the film, living with narcolepsy is far from a joke for Christine.

Diagnosed with the condition just two years ago after struggling with tiredness throughout her teens and university years, "presenting her case" to doctors in her search for an answer of what was wrong with her.

"I knew there had to be an answer for what was wrong with me," she tells me.

"I also knew that there had to be evidence for a diagnosis – presenting my lecture notes to the GP was like presenting 'exhibit A'."

However, after undergoing a sleep clinic in May 2014, Christine was misdiagnosed with sleep apnoea. Whilst the two disorders are quite similar, their treatment is quite different and Christine was left to continue trying to hold down a job as an accounting technician whilst studying for her chartered accountancy exams.

The misdiagnosis resulted in Christine not qualifying for the exam accommodations people with narcolepsy receive, such as being allocated a separate room with a place to lie down to sleep with the exam time frozen, and ultimately she lost her job.

"I physically could not have studied any more, but the over-compensating I had done to get through university wasn't working. My marks were highest on the first day of the exams, and then as the days went on I got more exhausted and I failed the exams on the 3rd and 4th."

With her Continuous Positive Airway Pressure (CPAP) treatment for obstructive sleep apnoea being unsuccessful, Christine was sent for a second sleep study in Glasgow in December 2017 where she was finally diagnosed with narcolespy.

She managed to secure a different accountancy job, but emergency surgery to remove a large cyst in her ovary forced Christine to be off work for two months and made her reconsider her future.

"My visit to hospital had really shaken me and made me see what was important in life and I started thinking about everything that had happened over the previous four years and how I had pushed myself into the ground trying to stay awake."

Fate led Christine to a new job opportunity working for her graphic designer brother-in-law, who runs his own wedding festival and themed wedding stationary company.

"My sleep consultant was telling me that one of the best things to manage my symptoms was to take naps. In an office environment, this just wasn't possible," says Christine, who has been working for Wedfest.co for just over a year now, processing orders, doing accounts and marketing from her own home, taking naps when necessary.

She also undertook a number of lifestyle changes, including forgoing many invitations to socialise, CBT to help her deal with anxiety and changes to her diet, through the guidance of Jade Bradley of Restore Nutrition.

"Nutrition is so important in managing a chronic illness. There are many foods that induce sleep for me. Sugar is one of them, even natural sugars. I could eat an apple and five minutes later be asleep on my desk. I now avoid dairy, have introduced fish into my diet for brain health and memory and also take magnesium and vitamin B supplements."

Christine still struggles daily with her condition, but after her long journey to diagnosis, she is sharing her story to raise awareness of the condition and help others.

"The hardest thing about living with narcolepsy is the impact on your mental health. This varies from the hallucinations you experience and really thinking someone is trying to strangle you in your sleep to feeling like a failure for not being able to complete a task because you're too tired."

It is estimated that the average time to diagnosis of narcolepsy is six to seven years. Christine hopes that through greater awareness and education, this will greatly reduce.

"Medical schools need to spend more time on sleep disorders. There are various studies published that showed that they spend as little as three hours over the course of their degree on sleep. GPs are simply are not well enough educated on how to recognise a sleep disorder.

"There is a stigma attached to mental health but there is also a stigma when it comes to having a disability. We need to realise that some people with a disability can still contribute to society if adjustments are made for them.

"I want them to see that I'm an ordinary girl with a very extraordinary condition, but that we are all the same."

You can follow Christine's blog at Thegirlwhoranawayinhersleep.com. For further information and support visit Narcolepsy.org.uk and Narcolepsyireland.org

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