lifestyle

Woman with rare sleep condition narcolepsy reveals how one Christmas chocolate causes her to drift off


Christine has sudden attacks of uncontrollable sleepiness because of narcolepsy (Picture: Christine Donaghy)

Tucking into the chocolates shortly after your turkey and trimmings is a Christmas tradition.

But for Christine Donaghy, just one Quality Street can trigger an attack of narcolepsy, meaning she involuntarily falls asleep, missing out on chunks of the day.

The condition is caused by the body mistakenly attacking the cells which product a brain chemical called hypocretin, which regulate wakefulness.

The entire festive period is particularly tough for the 29-year-old as the shopping, socialising and change in routine makes her symptoms get much worse.

She tells Metro.co.uk: ‘Christmas throws routine out the window and that can be really difficult. 

‘As the years go on, I try to keep some sort of schedule but the abundance of junk food and sweet treats have me sleeping a lot. I love chocolate but it doesn’t love me and sends me into a deep sleep. 

‘I usually risk it for Christmas but then it knocks me out.I lose hours out of the day where I could be socialising with friends and family but instead I’ve scoffed a Quality Street and slept for three hours. On the upside it seems acceptable to nap after dinner so at least I have some company.

‘I dread prepping for Christmas. Scrolling Amazon or being in a busy crowd in town is so exhausting for me. I can’t count the number of abandoned Christmas shopping trips I’ve had due to me just having no energy left.

‘I also have a huge family so it’s intense in terms of everyone talking and sometimes I’m just exhausted from having to keep up with all the chat.’

Christine tries to get on with life around her condition (Picture: Christine Donaghy)

Christine, who lives in Belfast, Northern Ireland, has lived with narcolepsy symptoms since her teenage years but it was only at university that things got so bad she was able to get a diagnosis.

She explains: ‘When I was 17 and in sixth form at school, I was falling asleep every day after school and felt so exhausted during the school day. 

‘I was also a nightmare to rise in the morning and my mother had to get me up an hour and a half before leaving for school because I would fall asleep so many times while getting dressed. 

‘With her help, I managed to get through school but it became a massive problem in university.’

In her final year of university, her sleep attacks became so bad, she would fall asleep throughout lectures, no matter how hard she tried and she was worried it was going to have a huge impact on her future.

She says: ‘I had an offer for a training contract for an accountancy firm which was conditional on getting a 2:1 classification. I was studying in the library only to fall asleep on my textbooks and I had to leave my classes due to sheer exhaustion. 

She has recently been allowed to drive again (Picture: Christine Donaghy)

‘I was really worried that I wouldn’t get my 2:1 and therefore my job so I took my lecture notes to my GP.’

Christine noticed that she was falling asleep but would continue writing, producing completely illegible notes.

Showing these to her GP, he agreed to refer her to a neurologist but it took Christine a long time to find out what was causing the uncontrollable sleepiness.

She says: ‘The path to diagnosis was a long one, I had gone to the GP when I was younger but they thought I was just a young girl experiencing puberty fatigue. 

‘They also misdiagnosed me with sleep apnoea first before diagnosing me with narcolepsy in December 2017.’

She was later told she also has a mild form of cataplexy which means a sudden loss of muscle tone triggered by strong emotion. The condition is often linked to narcolepsy.

There is no cure but Christine has been given medication to try to help her manage the symptoms. Day-to-day, it still has a huge impact.

She struggles with symptoms daily (Picture: Christine Donaghy)

She explains: ‘I am on a stimulant called Modafinil which I take each morning. I also have to take a nap each day at lunch for 20mins. 

‘I don’t cook anymore due to my poor concentration. I have had so many incidents where I had either cremated my dinner or woke up to my apartment being filled with smoke. 

‘I also have to be careful about what I actually eat because anything processed or with high sugar content (including certain fruits) can immediately trigger a sleep attack. 

‘If I push myself too hard I will burn myself out and this can be really difficult. For example, imagine your phone battery is only ever at 20%, you would have to be very selective at what activities you would do that day.  

‘Simple things like taking a shower or drying my hair can exhaust me and limit the amount of things I can do that day. I also can’t take baths because sitting down in the heat triggers sleep attacks and I would be at risk of drowning.’

Her symptoms go beyond just having to sleep more throughout the day.

‘It requires so much mental strength on a daily basis because every day is different,’ she says.

Christine, asleep (Picture: Christine Donaghy)

‘It impacts me both physically in terms of the excessive daytime sleepiness, poor concentration, poor short term memory, brain fog and sleep and cataplexy attacks. 

‘It also impacts me mentally as I am often shaken by my vivid nightmares and hypnagogic hallucinations from the night before.

‘These can vary from really thinking someone is trying to strangle you in your sleep to thinking someone is trying to burgle your house to thinking you are witnessing a terror attack. I always tell my boyfriend my dreams are so detailed it’s as if Spielberg himself directed them. 

‘There have 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. People have said to me before “Aw but sure it was only a dream”. You combine those visuals with the visual hallucinations, noise, smell and touch that comes with these nightmares and you come back to me on how you feel after!’

Socialising has become very difficult for Christine as she worries about making her symptoms worse or that she’ll have an attack in public.

She says: ‘I noticed that it was taking me as long as two weeks to get over a night out on a Saturday because my sleep was so disrupted. 

She wants to raise awarness of the condition (Picture: Christine Donaghy)

‘I also have a collection of embarrassing stories of falling asleep in public – I’ve fallen asleep at musicals, comedy gigs and even standing up in a nightclub.’

Living with a chronic condition has impacted the career she wanted to have, despite getting good grades throughout school.

Despite struggling with her condition at university, she did manage to secure the results she needed to take the job at an accountancy firm.

However, she needed to take chartered accountancy exams and she struggled to pass because of the length and intensity of the tests.

At that time, she didn’t have a diagnosis and despite explaining her medical history and trying to show the problem was that she couldn’t sit four long exams over four days, her request to break them up into two in Autumn and two in summer was denied. 

She sat the exams one more time but failed the third and fourth exams and her contract was terminated.

She managed to get another job with a more flexible working arrangement but continued to struggle because of her symptoms.

While on a course in London, she was so ill she had to be admitted to hospital and took two months off work.

Christine explains: ‘I had time to reflect on everything that happened. I was horrified at what I was forcing myself to do and the stress my body was under everyday. This led to me leaving the firm, they were lovely people but I just couldn’t manage the corporate workload with my symptoms as they were. 

‘I always felt like I was overcompensating and I doubted my work and abilities due to my symptoms.’

Christine now (Picture: Christine Donaghy)

Now she is working for her brother-in-law’s graphic design business, helping with orders and his accounts as she is able to work from home and nap if she needs to.

For Christine, one of the worst things about living with the condition is how others react.

She says: ‘I hate telling people I have it because I have had so many ridiculous comments made in the past. People have only heard of our condition through inaccurate portrayals in films. You don’t just get narcolepsy like a cold or flu and then it goes away again…it’s a lifelong condition.

‘People think that sleep is for the weak and this society values being insanely busy and burnt out. They fail to understand that when I sleep it is involuntary.

‘Some people will pass comment and it doesn’t matter what you say, they will never understand nor want to, I try not to get worked up about this type. 

‘Others can make comments and they genuinely don’t realise how serious it is and are embarrassed and apologise once I explain how serious of a condition Narcolepsy is. 

‘I usually start by telling them it’s a neurological autoimmune condition which means my immune system destroyed the sleep regulator called hypocretin in my brain and that it’s incurable.’

Christine is raising awareness about narcolepsy through her blog and Instagram page.

Do you have a story to share?

Get in touch at metrolifestyleteam@metro.co.uk.


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