At many times I wondered whether I had the energy to really organise The Big Sleep but I am so glad that it happened and have been delighted by the support and interest shown.

My motivation has and is two-fold, firstly for children and young people with ME.  Even today I heard about another 18 year old who is local with ME and fibromyalgia and lupus!  Apparently not severe but nevertheless I do keep wondering why so many young people are ill.

Second part of my motivation is awareness as until I was ill over 8 years ago, I did not know have a clue what ME really was – I did not know anybody with it, but I had heard of yuppie flu.  So to get people talking was great.  I put together a newsletter – which you can see below.  I can also send on to anybody who would like it – do email me at sally31@hotmail.com if you would like a copy.

I also came to find several people locally who have ME – 1 of whom I had met but had no idea – nothing like a deceiving invisible illness and the husband of a lady I know locally.  I also came to know of others with grandchildren, children, wives etc. also with ME.  The grandchildren made me particularly sad with the story of how few lessons they can get to at school and after greeting their grandfather how the children soon are laid out ill and exhausted often only 30 minutes after seeing their granddad.  Extremely sad.

The evening of Monday 12th May was the evening it was held.  People gathered at The Cross Keys in Pangbourne, a number dressed up for the Best Pyjama / (decent) Sleepwear competition.  It was a close call by the clap-a-thon between the tramp style string vest with pyjama bottom v the onesy giraffe … possibly with some bias my fiancé Chris won with his tramp style string vest and pyjama bottom.  I can confirm that he did not take the much coveted Lamborghini key ring but reclaimed a raffle prize of an ipod mini speaker which I donated – I did not know he had lost the other one I gave him several years back!

The evening continued with much fun and chatter, scrummy curry and ending up with most appropriately cocoa for some before finishing the event.

My respect for anyone who organises any charity event has increased enormously.  Maybe because of the ME but I had forgotten how much energy it takes plus I cannot multi-task anymore!  Luckily I am relatively organised and utilised Patrick Williams photocopier which I was kindly allowed to use and pulled it together – Catrina doing a large number of leaflet drops for me!!

The Pangbourne shops and businesses were amazing and generous with their raffle prizes including Beauty Box, Green Parlour, Greens, Ninos, Lamborghini, The Rhubarb Tree, Adam and Eve, Forresters, Finn Hair, Ladbrokes, Strutt & Parker, W.H. Smith, Collins, my Mum, Catrina and Lars Jaeger, Jill and Phil Hawkins.  A huge thanks also to all the donations via my JustGiving page – you will see the many donations received on line plus additional money taken on the night.

I found it a wee bit stressful organising but my mobility scooters came up trumps – with the Invest in ME balloons trailing in the wind I went campaigning over a few days to promote.  Most of Pangbourne shops and businesses were most welcoming.  Family and friends gave fantastic and much-needed support, both practically and emotionally.

Finally The Cross Keys hosted the event, made a fab curry, and by this donated £5.00 for every ticket sold.  The pub was a great venue for the event.

All the money went to the charity “Invest in ME”.   “Invest in ME (IiME) which was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals. We aim to do this by identifying the three key areas to concentrate our efforts on – funding for biomedical research, education and lobbying. Invest in ME aims to collaborate and coordinate events and activities in these areas in order to provide the focus and funding to allow biomedical research to be carried out.”  http://www.investinme.org/about.htm

The Newbury Weekly News published an article on page 12 of the Thursday May 15th edition and the Reading Post are publishing next week.  Both newspapers are also hoping to put the article online.

Right time for yet another rest as I am still recovering from the before, during and after.  But that is ok.  I am extremely glad that I organised it and do help it has done just a little in helping others.  Thank you.