I started a blog!

‘Whilst I was sleeping I started a blog’.

Until 4 years ago I thought I had the world in my hands, until the devastating moment it was ripped from under my nails. At first I was asking ‘why me’ and I still do to this day, however, I am now on a journey finding out that the world wasn’t ripped from under my hands, but that it was given to me perfectly fitted, perfectly meant to be, perfectly imperfect. The moment I fell asleep.

Back in 2010 I was a happy go lucky 16 year old, obsessed with bands and boys. The hardest thing I had to deal with was deciding whether to listen to The Jonas Brothers or watch Zac Effron.

I had just started college and was really enjoying myself, immersing myself in lots of extra curricular activities, dance, theatre and sport, and spending all of the time I had free, building friendships and generally feeling free.

However, it was all taking it’s toll on me, or so I thought. I was getting extremely tired everyday, falling asleep on the bus, where I was once full of energy and then falling asleep as soon as I got in. I was struggling to get any of my essays finished as I couldn’t keep my eyes open. My mum would shout at me, thinking I was lazy and that the work had to be done, but I would be falling asleep sat up whilst listening to her!

But I carried on, thinking it would pass, trying to not let it get in the way of good grades and a life. I started to miss days of college. I started to sleep more and more, until, one day, I didn’t wake up.

I didn’t wake up the next day.

Or the next day.

Or the next.

I was in and out of hospital, where non of the doctors could find out what was happening to me. I had people thinking I was faking it. I lost friends, and most importantly a massive chunk of my life was completely gone. I had also changed, into what seemed like a 5 year old, from my behaviour to even my speech. I was aggressive, eating everything I could get my hands on, and was complaining that everything felt like a dream. Was I going to be stuck like this forever?

Three months later I got diagnosed, which gave everyone a ray of light to grab onto, and then three months after getting diagnosed, lots of heart ache and the hardest time of my life, I seemed to return back to my normal self. Only to be greeted a couple of week later with all the symptoms once again.

Now, I can assure you that I didn’t prick my finger on a spinning needle, and I definitely didn’t need a kiss from a Prince Charming to wake me up, although that would have been quite nice.

You see, I have a neurological illness called ‘Kleine-Levin Syndrome’ or ‘KLS’, which is extremely rare. It is estimated that only 500-1000 people in the world suffer from it.

Woah right? That can really happen?

Well trust me, it most certainly can.

This is the information on the KLS UK support website, explaining it. It does a much better job of it than I ever could.

“KLS is a rare disorder characterised by recurrent bouts of excessive sleep associated with reduced understanding of the world and altered behaviour. KLS usually starts in the teenage years but can occur in younger children and adults. Each episode lasts days, weeks or months during which time all normal daily activities stop. Individuals are not able to care for themselves or attend school and work. People with KLS coming out of episodes will have little or no memory of what happened during an episode. Between episodes they have normal sleep, understanding and behaviour. KLS episodes may continue for 10 years or more. KLS is sometimes referred to in the media as “Sleeping Beauty” syndrome.”

It has changed my life an astounding amount. It’s a hard, painful journey, having to come to terms that your life is not the same as it was, and it’s even harder not being able to do the things that your peers do. You just have to take it all in your stride and look at the beauty it has bought you.

I am a much more accepting person now and I truly ‘grab life by the balls’. I never know when I am going to be ill so I can’t plan anything, and I have missed so much of my life. It’s extremely hard, but I’m a warrior and can get through it, with the help of my very supporting family and friends.

There is always a light at the end of the tunnel.

I will leave you now, with one of my favourite quotes by a talented man. A quote which I try to live by every day:

‘When you have a bad day, a really bad day, try and treat the world better than it treated you’ – Patrick Stump.

This is Beth.
For now,
Over and out.

 

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3 thoughts on “I started a blog!

  1. Nice to meet you, Beth! I have IH and have learned I have a lot in common with KLSers as well. You’re a very strong person. I’m so glad you created this blog! 🙂 KLS needs as much awareness as it can get. Take care!

    • I don’t know what is happening, I did reply but it seems to not have gone through so I am sorry if you receive about 5 replies from me haha! Thank you so much for writing to me as it means a lot because this was the purpose of the blog, to connect with people so we don’t feel as alone with illnesses and to help in any way which I can. I hope you are doing okay! 🙂

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