Queen of Sleep

Living with narcolepsy: a personal journey

About Queen of Sleep

with 4 comments

Queen of Sleep was diagnosed with narcolepsy in May 2007. 15 years after the onset of her first severe symptom, cataplexy.

In 2006 whilst on holiday, she was walking on a beautiful Greek island, fell asleep while the body continued to move forward… (Yes! Like a Zombie!) a friend got so worried she persuaded QoS to go to the doctor. Narcolepsy is not as uncommon as people seem to think. It is estimated that 1 in 2000 people suffer from narcolepsy yet it remains difficult to diagnose because society at large have a misconception of what narcolepsy really is…

Mention sleep difficulties to a GP and you are more likely to hear that you suffer from stress or depression than a serious chronic neurological condition. Within the next 10 years the medical professions awareness of sleep disorders have to improve! Just as it recently has with Chronic Fatigue and ME.

Queen of Sleep is trying to figure out the best way for her to manage a life with narcolepsy. She will post personal and scientific news, lifestyle advice and various other musings on sleep, sleep disorders and dreams. The blog is from a point of view of a narcoleptic but remember every narcoleptic is unique and what might be working and improving the condition for some might not at all be the same for others. It keeps QoS sane to know she is not insane – just sleep deprived. Recent research shows that there are about 25000 people with narcolepsy in the UK, of those 80% of those are undiagnosed. There are others – out there – and if she can be part of helping just one person take the first step towards a diagnosis and an improved lifestyle this blog has fulfilled its purpose.

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Written by Queen of Sleep

February 24, 2010 at 11:59 pm

4 Responses

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  1. Great blog!
    I saw you following us (me) on Twitter and came to check it out. I was wondering if you would mind if I linked to you on our main site?

    Planet Narcolepsy

    May 3, 2010 at 4:49 pm

    • It makes very happy to hear you like my blog, thank you. It would be great if you wanted to link my blog to your site: http://www.planetnarcolepsy.com.
      I visited your site earlier today and I particularly liked the ‘spoon theory’ on how to explain a chronic condition to someone who doesn’t understand what it’s like. It it particularly useful for family and friends. I have just started this blog and I think it is so important that we share our experiences. It is so easy to feel lonely and that no one understands. I have always felt lucky and my condition, in spite of being a real “pain” has made me so much stronger. All this I attribute to my family and friends for supporting me during the really bad years.

      Queen of Sleep

      May 3, 2010 at 11:54 pm

  2. I’m wondering if you’d be willing to help me out with a creative assignment I’m doing at my university. I am interviewing individuals with a mental illness to get an idea of the daily life of someone who suffers. If you’d be willing to help me out and share please email me ! 🙂 Thanks

    Andrea

    November 15, 2010 at 3:44 pm

    • I am not sure, well I am absolutely positive that I am not the right person for you to be interviewing. I don’t suffer from a mental illness. Trust me, I have been thoroughly investigated by several drs., therapists and consultants in the profession. Most of them, don’t have a clue what I have been going through which was very frustrating at the time. Psychologists understand narcolepsy worse than gp’s which really is a horrific thought. I needed help to unlearn a lot of behaviour that I had to adopt in order to survive, that’s basically what I do in therapy. I cope much better with my symptoms, most of the time people around me don’t even notice.

      Queen of Sleep

      November 16, 2010 at 3:00 pm


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