'My condition means it is dangerous to cook food or have a bath'

'My condition means it is dangerous to cook food or have a bath' Charie started suffering at 12 and it took years to get a diagnosis A young woman who can fall asleep almost anywhere, including on the toilet, in the bath, during a workout and on dates, says her condition is 'treated as a joke'. Charlie Balloqui suffers from narcolepsy, a condition that causes sleepiness and muscle weakness that she can’t control. The 23-year-old can collapse to the floor while remaining fully conscious and unable to speak or move. Charlie says people often assume she’s lazy or accuse her of faking her condition – even reporting her to management at her current job managing a dance studio. “I fall asleep in the nail salon, in the dentist, on public transport, in workout classes, on first dates, at restaurants and at my desk at work,” said Charlie, from Portsmouth. “I fall asleep on the toilet for hours, and have fallen asleep in the front row of a theatre show, as well as on a lilo in the swimming pool. “I even fell asleep during my GCSE exams. I’ve fallen asleep in some dangerous places. The bath isn’t a great one, so my mum doesn’t like me taking baths. “I’ve fallen asleep a couple of times with food in the oven and woken up to smoke alarms, which is definitely dangerous. Once, I fell asleep [on the bus] until the terminus, and the bus driver came upstairs and started shouting at me to get off, calling me lazy and stupid. “This really shook me as I didn’t know where I was and we were the only people on the bus.” Charlie first went to the doctor when she was just 12 after repeatedly falling asleep at school. But she says she was told she was simply experiencing the “normal changes” of growing up. She said: “I was a pretty good student and well behaved, but I was constantly falling asleep in class without realising and would try to cover it up as best as I could because I was scared of getting in trouble. “People at school said I was faking it or just being lazy. Even my parents would get annoyed at me for being lazy when I was sleeping all the time. My family and friends all just knew me as being a sleepy person. “On car journeys, at the cinema and even sometimes out for dinner, I would fall asleep. I think some people thought I was just joking around or being lazy. I remember a doctor telling my mum that I was at the age where my hormones were changing and it’s normal to be tired. “I was so embarrassed, as if I was being an annoying kid pretending something was wrong, and almost felt like I was wasting the doctor's time.” Charlie was eventually diagnosed with type 1 narcolepsy shortly before her 18th birthday, after her mum repeatedly pushed doctors to investigate further. She also experiences cataplexy, a sudden, brief loss of voluntary muscle control or tone that is usually triggered by strong emotions like laughter, surprise, anger, or sadness – which can occur in people with type 1 narcolepsy. She said: “Being diagnosed was so refreshing, knowing I could tell people that I'm not lazy and I'm not dramatic.” Today, Charlie says her symptoms vary dramatically from day to day. She said: “Sometimes I have good days and I forget I have a disability, and then it hits me on other days. I get upset that I can’t function to my full potential. “I’m very active and look after my health, but I can’t really do much on my bad days but accept it. I’m not allowed to legally drive – I fall asleep whenever I’m in the motion of a car. Cataplexy comes on strongest when I’m shocked or sad. “When I was told a relative had passed, I dropped to the floor and couldn’t move, but I was awake and fully conscious. It lasted a couple of minutes; it was scary, but I knew it was fine because I’d felt muscle loss before. “I was at home, so it was ok but when I’m in public, it’s very scary. Before an episode, I usually feel cold, and my eyes start getting extremely heavy. “If I’m out somewhere, I shouldn’t be falling asleep, and I start fighting it; I start to hallucinate, and sometimes I’ve seen shapes or people that aren’t there because my brain is falling asleep. I t’s a very strange feeling.” Despite the challenges, Charlie says she has found ways to build a career around her condition. She now works three days a week managing a dance studio and spends the remaining days auditioning. She said: “My bosses are the most supportive and understanding people I’ve ever met. The office has a sofa where I’m allowed to take naps if I'm having a hard day. “I don’t always expect people to understand what I go through, but I’ve hit the jackpot with my current employers and how much they look out for me and check in on me. In other jobs, I’ve lied or hidden my narcolepsy as I was too embarrassed or scared it would affect my chances of getting employed or progressing. “But at the moment I’m very lucky.” She met her partner Patrick Asikaiwe, 25, two years ago and says he researched narcolepsy before their first date. Charlie said: “On our first date he had googled ‘how do I look after my girlfriend with narcolepsy and is there anything I should know’. He showed me his Google history a few months after. “We’ve been together ever since that first date.” Charlie previously took methylphenidate to help her stay awake; she stopped taking it this year. She now prefers to manage her symptoms through exercise. Charlie added: “I very much use humour to get through it. Some people might think that’s unhealthy, but I really do live by ‘if you don’t laugh, you’ll cry’. “I think having narcolepsy forced me to quit my desk job and go and chase a life I love. So in a way, I’m grateful for it. I’m pretty good at just getting on with it, but sometimes on bad days it does build up and get me a bit emotional. “But then also I get over it and then carry on and focus on all the positive things in my life.” A young woman has revealed how she can fall asleep almost anywhere, including on the toilet, in the bath, during a workout and on dates – with a sleeping disorder treated as a “joke” to blame. Charlie Balloqui suffers from narcolepsy, a condition that causes sleepiness and muscle weakness that she can’t control. The 23-year-old can collapse to the floor while remaining fully conscious and unable to speak or move. Charlie says people often assume she’s lazy or accuse her of faking her condition – even reporting her to management at her current job managing a dance studio – but it affects every aspect of her life. “I fall asleep in the nail salon, in the dentist, on public transport, in workout classes, on first dates, at restaurants and at my desk at work,” Charlie, from Portsmouth, told creatorzine.com. “I fall asleep on the toilet for hours, and have fallen asleep in the front row of a theatre show, as well as on a lilo in the swimming pool. “I even fell asleep during my GCSE exams. “I’ve fallen asleep in some dangerous places. “The bath isn’t a great one, so my mum doesn’t like me taking baths. “I’ve fallen asleep a couple of times with food in the oven and woken up to smoke alarms, which is definitely dangerous. “Once, I fell asleep [on the bus] until the terminus, and the bus driver came upstairs and started shouting at me to get off, calling me lazy and stupid. “This really shook me as I didn’t know where I was and we were the only people on the bus.” It’s nothing new for the young woman, sadly, who first went to the doctor when she was just 12 after repeatedly falling asleep at school. But she says she was told she was simply experiencing the “normal changes” of growing up. She said: “I was a pretty good student and well behaved, but I was constantly falling asleep in class without realising and would try to cover it up as best as I could because I was scared of getting in trouble. “People at school said I was faking it or just being lazy. “Even my parents would get annoyed at me for being lazy when I was sleeping all the time. “My family and friends all just knew me as being a sleepy person. “On car journeys, at the cinema and even sometimes out for dinner, I would fall asleep. “I think some people thought I was just joking around or being lazy. “I remember a doctor telling my mum that I was at the age where my hormones were changing and it’s normal to be tired. “I was so embarrassed, as if I was being an annoying kid pretending something was wrong, and almost felt like I was wasting the doctor's time.” Charlie was eventually diagnosed with type 1 narcolepsy shortly before her 18th birthday, after her mum repeatedly pushed doctors to investigate further. She also experiences cataplexy, a sudden, brief loss of voluntary muscle control or tone that is usually triggered by strong emotions like laughter, surprise, anger, or sadness – which can occur in people with type 1 narcolepsy. She said: “Being diagnosed was so refreshing, knowing I could tell people that I'm not lazy and I'm not dramatic.” Today, Charlie says her symptoms vary dramatically from day to day. She said: “Sometimes I have good days and I forget I have a disability, and then it hits me on other days. “I get upset that I can’t function to my full potential. “I’m very active and look after my health, but I can’t really do much on my bad days but accept it. “I’m not allowed to legally drive – I fall asleep whenever I’m in the motion of a car. “Cataplexy comes on strongest when I’m shocked or sad. “When I was told a relative had passed, I dropped to the floor and couldn’t move, but I was awake and fully conscious. “It lasted a couple of minutes; it was scary, but I knew it was fine because I’d felt muscle loss before. “I was at home, so it was ok but when I’m in public, it’s very scary. “Before an episode, I usually feel cold, and my eyes start getting extremely heavy. “If I’m out somewhere, I shouldn’t be falling asleep, and I start fighting it; I start to hallucinate, and sometimes I’ve seen shapes or people that aren’t there because my brain is falling asleep. “It’s a very strange feeling.” Despite the challenges, Charlie says she has found ways to build a career around her condition. She now works three days a week managing a dance studio and spends the remaining days auditioning. She said: “My bosses are the most supportive and understanding people I’ve ever met. “The office has a sofa where I’m allowed to take naps if I'm having a hard day. “I don’t always expect people to understand what I go through, but I’ve hit the jackpot with my current employers and how much they look out for me and check in on me. “In other jobs, I’ve lied or hidden my narcolepsy as I was too embarrassed or scared it would affect my chances of getting employed or progressing. “But at the moment I’m very lucky.” She met her partner Patrick Asikaiwe, 25, two years ago and says he researched narcolepsy before their first date. Charlie said: “On our first date he had googled ‘how do I look after my girlfriend with narcolepsy and is there anything I should know’. “He showed me his Google history a few months after. “We’ve been together ever since that first date.” Charlie previously took methylphenidate to help her stay awake; she stopped taking it this year. She now prefers to manage her symptoms through exercise. Charlie added: “I very much use humour to get through it. “Some people might think that’s unhealthy, but I really do live by ‘if you don’t laugh, you’ll cry’. “I think having narcolepsy forced me to quit my desk job and go and chase a life I love. “So in a way, I’m grateful for it. “I’m pretty good at just getting on with it, but sometimes on bad days it does build up and get me a bit emotional. “But then also I get over it and then carry on and focus on all the positive things in my life.”