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Hey Everyone

Some of you may know that I am involved with a new project called Neuro Nula. This site is a new online community for those with neurological conditions, their carers and families and its aim is to bring patients and their families together to share their stories, experiences, advice and most of all their support to help others and to make new and lasting friendships.

The site will include stories of patients with a variety of neurological conditions, as well as safe and moderated forums to chat with others and get advice and support as well as signposts for a variety of UK neurological organisations that can provide further advice and support.

I am honoured to have been asked to share my own personal story, which I have written and will be added to the site when it is up and running.

The site is hoping to be fully up and running by mid October and are looking for other people with neurological conditions to share their story as well as finding out about local neurological organisations that are in your area. So if you have any knowledge of such organisations or would like to share your story to help others then please get in touch with the team at their email address:

NeuroNula@live.com

Welcome again to another WEGO Health Advocating for Another Carnival, it’s the fifth day and the prompt is as follows:

It’s storytelling day! Write a story about yourself, your community as though you are a children’s book author.  Be sure to include a beginning, middle, and end.  Extra points for illustrations! 

I love this prompt! It’s really different and am sure it is a style of writing us health activists haven’t tried before.  It seems to be a lot harder than it sounds but here it goes…

Once upon a time in a large kingdom called Wales there lived a young princess named Rhiann.  Rhiann was a very lonely princess, nobody understood her as she had an invisible illness meaning she was unwell but nobody could see what was wrong.  This was due to a problem with her brain, a problem no-one else in the kingdom suffered from.

As no other person could see why the princess was so unwell, many of the servants and commoners were suspicious of her assuming that she was inventing the illness to gain attention.  This made the princess so very lonely, and isolated, her only friend being her trusted dog named Honey.

One day, along with Honey, Rhiann went for a walk in the forest where she came upon a little cottage.  The curiosity got the better of the young princess and she stepped inside, “Hello?” she cried out.  Then a mysterious looking witch came into the light “Yes, princess?” she replied.  “Hello, my name’s Rhiann and I just happened to come across the cottage, I’m awfully lonely and was hoping to find a friend.”

The old witch stared at her in wonder, “Yes, my dear Princess, I have heard all about your troubles, and I have something here which will solve all of your problems”.  The old woman gave her a mysterious looking box, which looked very much like a large book. Rhiann opened this book, and instead found a screen with a board with keys, one featuring each letter of the alphabet, as well as numbers and other symbols.

“Thank you so much” the princess cried out, running out of the cottage, Honey behind her, determined to get back to the castle as soon as possible to try out the mysterious object.  As she arrived, Rhiann headed straight to her chambers, settling the mysterious object on her bed.  After studying it for several minutes, the princess found an on button – and she was soon transported to other worlds on the screen.  This thing she was given, according to a note that was attached to this object by the witch, was called a laptop, in which she was able to explore the ‘internet’ – a portal which could take the princess wherever she wanted to go.  The witch also gave instructions on how to use the internet as well as giving her addresses in which she could go on to make friends.

The princess desperately typed and typed these addresses on the laptop and whoosh, she found everything she could wish for.  She found a place were there were a lot of different people with a variety of different medical conditions.  She chatted for hours and hours with these people, talking about a lot of different things.  And she found that these strangers, accepted her for exactly who she was with no judgement.

And as the months and years passed all of these new people became her good friends and the princess was never lonely again.

THE END

So, what do you think of my attempts at writing as if I were a children’s book author?  I wrote this as if I were the main character – and the loneliness and isolation ‘the princess’ felt was the same feelings that I have had for many years, the feeling that you are not accepted.  That was until, like the character in my story I became active on the internet, especially within the health community as since then I have had the pleasure of meeting a lot of people who have accepted me for exactly the person I am, and I am blessed to call them my friends.  This is dedicated to all of them.

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