Imagine a life where you sleep for over 22 hours in a day but still feel tired in the time you think you have to function?
A life whereby the day seems to be so short and you are unable to make your dreams come through but rather re-dream scenarios over and over again?
Such a dilemma is being faced by Heather Reed, a Canadian Conservation Biologist who is battling two conditions – myalgic encephalomyelitis (ME) known as chronic fatigue syndrome and Kleine-Levin Syndrome (KLS), also known as Sleeping Beauty syndrome – for over seven years.
Heather explained that she used to live an active, very mentally and physically engaging life.
But when she got a cold which turned into a viral disease, she found herself bedridden for almost three months, noticing that she was still exhausted even after she recovered.
”I went from my healthy life to not being able to get out of bed, because the fatigue was so crushing and all encompassing. I was tired to the point where it physically hurt,” she said.
She was then diagnosed with ME and attributed her long sleeping periods to being a symptom of the illness.
She learned to manage her life all over again balancing her work with Graduate studies. She was successful juggling the two up until she had to undergo emergency kidney surgery. She was unable to recover smoothly after the operation.
”That was a trigger for it,” she said.
”I was sleeping between 18 and 22 hours a day. It lasted for about three months. It didn’t matter how desperately I tried to regulate my sleep, I just couldn’t stay awake.”
Heather, in desperate need for an explanation to what was wrong with her, visited a neurologist who almost immediately diagnosed her with KLS – Sleeping Beauty Syndrome.
KLS is a rare condition that affects around 1,000 people across the world. People with the condition go through episodes of sleep for most of the day which can last for days or weeks.
Heather’s combination of both chronic fatigue syndrome and sleeping beauty syndrome means her desire for sleep is outrageous.
During her invaluable two hours when she has to function, she says she barely can get anything done.
”People say things like, ‘Oh that’s so much sleep. You must be very well rested.’ But it’s not very good quality sleep, so even if you are sleeping constantly, you wake up feeling like you have been asleep for 10 minutes. I can’t just snap out of it.”