Queen of Sleep

Living with narcolepsy: a personal journey

Today, I woke up fully rested….

with 2 comments


It’s amazing to wake up rested because it happens so rarely I forget what it feels like. This morning, I felt great! It was just that…it was 12pm. Only 3,5 hours of day light remaining. I am starting to feel like a big piece of dough being in Sweden.  Went outside for a walk and whined that it was so cold. It was only -13, and I felt as if my legs would fall off. I have become such a wimp, living in a city! No, tomorrow I am going to get a pair of leggings (I love the Swedish word: Långkalsong) so I will keep warm. Today, I have also finally found a work-out place that does spinning, body core, body pump etc. I have also got the opening times for the local indoor swimming pool and gym so I think I am all sorted now. No more excuses for that doe feeling.


I am also researching light therapy and body blues since I am in Sweden on the 21st, the shortest day of the year! (with the least daylight). There is a light therapy room in an old persons home that I will try to visit and I might even pay a visit to a tanning bed. Not, so good but seriously, it’s pitch black here! 08:53-15:26 is the shortest day of the year!


Written by Queen of Sleep

December 21, 2010 at 12:04 am

2 Responses

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  1. What meds u on Queen? Because I still am struggling on provigil?my lifes a dream and I only see night most of the time? My gps ignore my nearos and I only survive as a medic my self but how did u get ur rested night????? I’m sleeping my days away or crying out of humiliation as my legs give way!!


    December 29, 2010 at 5:30 am

    • It is a rare ocurrance that I wake up and want to kiss the world! Modafinil did me more harm than good so I stopped taking them but was still on Clomipramine (quite a low does – I think). Meanwhile, I was sorting out practical issues, one by one, that had amounted over a period of 10 years that cause me a great deal of stress, because I had pretty much no control over anything in my life. I worked and still work on minimising the stress in my life by dealing with it and exercise in various forms in places i feel safe.
      My specialist then offered me Dex. that I started taking about a year and a half ago. I did not want to come on it but then again I wanted a ‘normal’ life. There addictive and little evil pills to take in the long run (I believe). However, they worked much better for me and also helped me sleep better meanwhile I increased the anti -depressants grammes by grammes. I think, the best for me is to go down in the summer and up again in winter -strenght of meds that is! I am still experimenting with alternative therapy and I am convince that I will be able to increase them and decrease synthetic medz in the future. I just need to learn to adjust. I still get cataplexy in public but I can also show my emotions more in public (really freeing feeling). My doctor still think that Xyrem or a combo would be best for me so I am waiting for my application to get back for me with a decision. I hope it gets approved (somehow I feel there is small chance despite the economic climate) then again I also hope it gets rejected because I don’t want to get stuck to one place in the world. I honestly, don’t know what would be best. I am suspicious of drugs and yet my life would be so tough without them – I don’t even know if it would be bearable.
      A friend, helped me in September, to get into a routine with going to the gym. She is manic-depressive so we complement each other quite well – take turns with the ups and downs/the high and the lows. She took me to the gym almost everyday for three weeks. After that I got addicted and now I can’t wait to get back. It has helped me to sleep better too. I also, now, eat a massive breakfast early and I think that it really helps to sleep on an almost empty stomach because the the workings inside your belly does not trigger dreams. Everything triggers dreams for me. I also started therapy in May last year and I have been keeping it up on a weekly basis for 8 months – It has been helpful for me to look at various areas I need to work at and my communication with other people etc. Then again, I think everybody, would benefit from therapy….narcoleptic or not. Start by changing 1 thing in your life! Be nice to yourself reward and praise yourself when no one is listening for acheiving ths one thing. It makes you feel good and gives you a sense of accomplishment. Then make one more change, not too quickly, give your body time adjust. Before you know it you look at all the things you have changes and notice how much better and more energetic you feel. I hope my reply isn’t too “happy clappy” because it takes time and it’s occasionally frustrating – you need ALOT of patience with yourself (well I did and do!) and it’s a skill you have to learn, to listen to your body. Lots of Queenie love to you!

      Queen of Sleep

      December 29, 2010 at 8:13 am

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