A woman who has described herself as the “real life sleeping beauty” has opened up about a sleeping disorder she has that can see her sleep for days at a time.
Suffering from hypersomnia, a rare disorder that once caused her to miss a holiday because she was in a deep sleep, mother-of-two Joanna Cox was diagnosed with the condition following years of having feelings of restlessness and not being able to remain awake.
Speaking to Manchester Evening News, 38-year-old Joanna also explained how she suffers from “vivid hallucinations” as well as having recurring visions of “hundreds of spiders crawling” all over her bed.
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The Castleford in West Yorkshire continued to say how she is currently desperate to find a doctor to help her manage her symptoms and that the disorder is “ruining her life”.
“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 told the publication.
“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."
She first began experiencing symptoms in 2017 and since then has been forced to quit her job as she was unable to complete a shift without the need to take a rest. She is also no longer able to drive as she may fall asleep at the wheel and has previously fallen asleep behind a club and missed a holiday to Spain with her daughters.
“It started out of nowhere, nothing triggered it, I just felt really tired. 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."
She was referred to a sleep clinic at Pontefract Hospital, Yorkshire in October 2021 after speaking with several different psychologists. After being monitored overnight she was officially diagnosed with the rare sleep disorder idiopathic hypersomnia.
However, the condition got worse as the years progressed and Joanna currently struggles to stay awake for longer than a few hours at a time. She says she is most alert during the early hours of the day. She also suffers from vivid dreams when she is fighting to wake up from a deep sleep.
Currently living alone, she is regularly visited by her two daughters Caitlin Cox, 20, a student nurse, and her youngest Isabelle, 18, a waitress, who both pop over to check on their mum and walk the dogs if need be.
“It’s been really tough on my daughters. When it first happened in 2017, they were both living at home, and everything changed overnight," she said.
"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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