Queen of Sleep

Living with narcolepsy: a personal journey

Queen of Sleep attends Narcolepsy Conference 2011

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Narcolepsy UK’s annual conference was held at Robinson College in Cambridge on the 24th -25th of September. Normally, I attend the entire weekend but this time I decided to attend Saturday only. It was a bit of a gamble travelling to Cambridge, attending the conference and then travelling back again. I just didn’t know if I would be able to cope, concentrate and maintain my energy levels. I brought a friend who knows me well, just in case… The conference has a snooze room but I don’t know if I would use it. I think it might be difficult relax because it is unfamiliar. It  is a total oxymoron but I feel more used to, or comfortable if you like falling asleep in a lecture, during a talk etc.

I arrived at Robinson College just in time to register in a large marquis where fellow participants were talking and drinking coffee, tea eating biscuits/fruit. I met Margaret for the very first time (she answer the phone when you call Narcolepsy UK), she had travelled all the way from Scotland to attend and she seemed like a lovely lady. I got the program and was informed about where everything was located. Right next to the marquis was the lecture hall, pretty normal lecture hall. Unfortunately, very little natural light and no windows. It made my friend sleepy who doesn’t have narcolepsy at all. The conference started with the director and the chair of Narcolepsy introducing the event, recapping of this years events and introducing: Professor Emmanuel Mignot. World leading researcher in Narcolepsy. His talk was engaging, entertaining, informative, serious and heartfelt. It was the best talk on Narcolepsy I have ever attended. He is a real inspiration. Afterwards, there was a q&a session, or if you rather attended a workshop on benefits or lifestyle (with Mignot’s assistant Mali) you could now go off to smaller seminar rooms. The immediate feedback from the lifestyle session was extremely positive – I sent my friend because I wanted to attend the Q&A with Mignot. Lunch was delayed but who cares when the content of the conference is of such a high standard? This year we had to decide between cold or hot (a meal) lunch. I got a bit confused because I like smorgasbord where you can choose exactly what you want and take it yourself. Sure it is lovely to be served and the poached salmon was delicious. Dessert I had to search for because the table was situated somewhere completely different. I have a terrible sweet tooth but I am learning to differentiate when it’s sleepiness and when it’s not. Low fat lime cheese cake or sweet meringue nests were served. 10 minutes into the talk with Dr.Shneerson from Papworth, I had booked a blood donation session. My blood and many others are to participate in Mignot’s research into narcolepsy so it was for an extremely good cause. How often do you have 150 people with narcolepsy in 1 place?  They took what felt like not a lot of blood at first but 1 hour afterwards in combination with my lunch, I hit rock bottom and snoozed through most of Dr. Shneerson’s talk. His voice was a bit monotone as well which didn’t help my attention capacity. I started to recover after 3pm but that nauseous feeling you get when you blood sugar has gone on a roller coaster for the last 2 hours was still there. I needed to leave and I needed to go home and rest. On my way out I purchased some Christmas cards from Narcolepsy UK’s Marketing officer Claire. My friend and I walked through Cambridge for a bit for some fresh air and to see a little of the city, then we took the train home.

I believe that there will be some resources from the conference video/audio on the website: http://www.narcolepsy.org.uk

Written by Queen of Sleep

September 26, 2011 at 10:18 am

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