A woman who has a sleeping disorder that can see her sleep for days at a time has described herself as the 'real-life Sleeping Beauty'. Joanna Cox suffers from hypersomnia, a rare disorder that once caused her to miss a holiday because she was in a deep sleep.
The mother-of-two was diagnosed with the condition after years of feeling restless and struggling to stay awake.
Joanna says she also suffers from “vivid hallucinations” and has a recurring vision of “hundreds of spiders crawling” all over her bed.
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The 38-year-old, from Castleford in West Yorkshire, says the disorder is 'ruining her life' and is desperate to find a doctor to help her manage her symptoms.
“It’s honestly ruining my life - I'm like a real-life Sleeping Beauty. I can't be woken up once I'm asleep," Joanna said.
“I can’t work, I can't drive, and I can never make any plans because I don’t know if I’ll be awake. I wake-up not knowing what day it is or how long I've been asleep for.
"It's such an isolating condition to live with and I just really want some help."
Joanna first began experiencing symptoms back in 2017. Since then, she has been forced to quit her job because she couldn't finish a shift without needing to rest or nap, and can no longer drive due to falling asleep at the wheel.
The condition has also seen Joanna fall asleep behind a club during a night out and miss a holiday to Spain with her daughters because she slept through the flights.
“It started out of nowhere - nothing triggered it, I just felt really tired," she added. "At first, they thought it was depression, and I was referred to a mental health specialist.
“But that was ruled out because I didn’t have any other signs apart from tiredness. I met with an ear, nose, and throat specialist in case an issue with snoring was affecting my sleep.
“I went for loads of tests, doctors thought it was an infection, Multiple sclerosis and even cancer at one point. No one could diagnose me and it all the while I was getting worse.
“In the end, I had to quit my job around 2019."
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After speaking with several different psychologists, Joanna was eventually referred to a sleep clinic at Pontefract Hospital, Yorkshire in October 2021. She was monitored overnight and officially diagnosed with the rare sleep disorder idiopathic hypersomnia.
The condition has continued to get worse over the years, and now Joanna struggles to stay awake for longer than a few hours a day. She says she tends to feel most alert during the early hours, so is often out walking her cockapoos, Autumn, and Bobby, both six, around 2am.
As well as struggling to stay away, Joanna says she suffered "horrible vivid dreams" when she is fighting to wake-up from a deep sleep. She currently lives alone but is regularly visited by her two daughters Caitlin Cox, 20, a student nurse, and her youngest Isabelle, 18, a waitress.
The pair pop over to check on their mum and walk the dogs if she hasn't woken up to take them outside.
“It’s been really tough on my daughters,” she said. "When it first happened in 2017, they were both living at home, and everything changed overnight.
"I couldn't drive them to school because I was falling asleep at the wheel, so we had to arrange it through the school. I couldn't have done it without their support.
“Isabelle has seen me at my worst and basically had to step up and be mum – waking me up as best she can to make me eat or help me to the loo. I’ve had carers in the past, but no one really knows how to look after me because it's such an unusual condition.
"I can wash and feed myself but it's just getting me to wake-up which is impossible. Someone made me a cup of tea once, but I was half asleep when I tried to drink it and ended up scolding myself.
“Now I just try and deal with it by myself which can be difficult, but I don’t know what else to do.”
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