Thursday 19 September 2019

'I fell down the stairs holding my then 10-month-old son' - Kristine Beck reveals devastating impact of narcolepsy on her life

Kristine's then two-year-old son helped her to call an ambulance after the fall which left her seriously injured

Kristine Beck with her Son Logie Winston (3) who helped her when she fell down the stairs. She has just recently been diagnosed with Narcolepsy which caused the fall.
Kristine Beck with her Son Logie Winston (3) who helped her when she fell down the stairs. She has just recently been diagnosed with Narcolepsy which caused the fall.

Denise Smith

A young mum who falls asleep up to 10 times a day has revealed how narcolepsy nearly cost her her life.

The disorder, which is characterised by excessive sleepiness, sleep paralysis and hallucinations, is often portrayed with slapstick comedy in Hollywood movies for laughs.

But for Kristine Beck it's a daily nightmare which left her with devastating injuries when she fell down the stairs after falling asleep.

"I went from being an independent, working mother to bed bound and unemployed," says the 28-year-old from Dublin.

Kristine Beck with her Son Logie Winston (3) who helped her when she fell down the stairs.
Kristine Beck with her Son Logie Winston (3) who helped her when she fell down the stairs.

"The media portrays it to be a comical chronic neurological disorder - but that couldn't be further from the truth.

"I have fallen asleep at a stop sign, in the hairdressers, and my three-year-old's most used phrase is 'wake up mammy'. I have hallucinations, I have conversations with people who aren't there and I can cook dinner in micro sleep and have no recollection of doing it."

The marketing manager, who lives in Greenhills, south Dublin, with her fiance Ian and two children Logan (3) and Noah (1), developed Type 1 Narcolepsy with Cataplexy in April and has since been completely debilitated by the brain disorder.

"Cataplexy causes my body to go into total paralysis and I just drop to the ground. While I am fully aware of what's happening, I cannot control it.

"At the beginning it started off very slowly, it felt like vertigo where the room was spinning and then my knees started buckling. I would slur my words - I couldn't hold a knife or fork - and then I was on the ground frozen, fully aware but unable to move.

"This culminated in a devastating fall I had in May when I fell down the stairs holding my then 10-month-old son, Noah.

"I remember standing at the top of the stairs, I got to two steps from the top and my body suddenly became paralysed, my right leg got stuck in the banister and I fell down five steps but I managed to keep hold of Noah.

"I held on to Noah for the 25 minutes it took for emergency services to get there. Logan who was just two at the time was an absolute hero throughout the entire ordeal.

"He kissed me, told me daddy would fix it, got me my phone so I could ring an ambulance, brought his baby brother toys to distract him and then even got a sweeping brush to unlatch the door and let the fire brigade and paramedics into the house.

"As soon as I handed Noah over to the paramedics and knew he was safe I passed out in agony."

Unconscious and seriously injured, it was 40 minutes before Kristine was freed and rushed to Tallaght hospital where she was admitted for ten days.

"My ankle was smashed into several pieces, my leg was broken in three places, my knee was dislocated, my ligaments in my foot were torn to shreds and my shin bone snapped in two and broke through the skin.

"After a six-hour surgery to repair the damage I was on bed rest for four months and it will be a year before I walk again. And even at that I will live with the pain and swelling for life. I will never walk normally again."

The bride-to-be, who is due to be married next November, is now hoping to raise awareness about the disorder ahead of World Narcolepsy Day on Sunday September 22.

"We got engaged on New Year's Eve and have the wedding booked but I am nervous because of my leg, and also, how am I going to make it through the day? At what point can you go for a nap on your wedding day?

"Cataplexy is triggered by emotions so what if I fall at the aisle?"

Kristine, whose Instagram handle is @misskristinebeck, is 'angry and sad' at the 'out-of-the-blue' condition. After being diagnosed, she was told she had to wait 'a couple of months' for tests and told she 'should take care not to fall down'.

Forced to pursue private healthcare, the devoted mum explains: "I don't recognise my life anymore. Now I take controlled naps.

"In order to sleep at night, I have to take the prescription date rape drug which is terrifying.

'Although you fall asleep really easily with narcolepsy, you can't stay asleep. Amphetamines are then used to keep me awake."

She and her fiance have used their savings to fund her medicine and Ms Beck can no longer drive, read or even watch a film.

"When people say, 'oh, it must be great, you can nap whenever you want,' that's not my reality. My diagnosis means medication for life. And while it's not life ending, it is life changing and it is life limiting."

via Sunday World

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