Friday, 16 May 2014

The Princesses and ME

Photo source: Pintetest

Finally I am getting round to posting about our The Princesses and M.E event on Monday 12th May, which was M.E awareness day. Just to recap, the reason  behind the Princess theme came from joking around about Sleeping Beauty having nothing on us M.E sufferers. And just like the Princess and the pea we can often be hyper aware of the smallest of things. The clothes on our skin. Each crease in our bed sheets. When we can sleep that is. Although lucky Auroura got whisked off by Prince Charming and lived happily ever after. Well as much as a handsome Prince wouldn't necessarily be unwelcome, finding some long lost answers in the form of clearer diagnostics, research, an effective treatment and the wish that my heart makes, a cure, would be a very happy outcome for us. 

Photo source: Sian Wootton

So here I am all Princessed up for the ocassion. Mastering the stairs at the best of times isn't easy so doing it in that dress was rather challenging. Definitely not to be attempted in heels as well, hence the Cinderella esque photo. She may have left her shoe behind but for us sufferers it's our previous lives and very often our brain cells. Contrary to popular believe the object in my hands in the top centre photo is some knitted peas not a frog. They were given to me as a gift. Below is a montage of all the other Princesses that managed to dress up on the day. Great effort ladies (And Allan)!

Photo source: Sian Wootton
Photo source: Sian Wootton

Photo source: Sian Wootton

And of course most of us don't have wicked witches that send us into a 100 year sleep by making us prick our finger on a spinning wheel. We are far more likely to prick our fingers on these...

Photo source: Sian Wootton

M.E Awareness day this year was just epic. I still have lots of blog posts to read. So many people joining forces to raise as much awareness as they possibly could. Even a retweet can generate so much awareness. Despite our suffering people really did show that things need to change. That they want a better life for themselves and other sufferers. Unfortunately not everyone was able to participate as much as they had hoped but that in itself shows the depth of the illness. The event was never about pushing ourselves too far, just doing what we could. Having said that I did go a bit too far. I got a bit carried away with the joy of organizing something again and being part of such a lovely and dedicated group of people. 

Photo source: Sian Wootton

The above photos show me all made up in Princess mode and on the right is me that night, seriously suffering from Post Exertion Malaise or Post Princess Malaise. I was exhausted, in pain, couldn't talk or swallow and completely bedbound the next day. I decided to post this photo on my instagram and Facebook to try and raise a bit more awareness. I wanted people to see what M.E actually looked like. Like I said in my invisible illness post, it wasn't about seeking attention or sympathy but showing the truth to raise awareness. It was great to receive some lovely comments. Heck it was great people even read the post!

Photo source: pinterest

In total The Princesses and M.E raised over £4000 for Invest in M.E, which really  amazed us all. We now have two matrix slots for the Rituximab trial and the rest of the money raised will go towards more biomedical research to try and find where abouts this nasty disease is hiding in our bodies. That way we can target it and hopefully eliminate it. 

It was great for me to be organizing events again. However it was a gift to be part of such a dedicated team. I think it was the proudest I've ever been. Here's a group of seriously ill people, many of whom are mostly housebound and yet they have so much to give. It's one thing I will be grateful to M.E for. Bringing some really inspiring people into my life. 

So all in all it was a great success and loads of fun getting to be a Princess for the day. Thank you to all the Princesses, whether you were able to dress up or not and a HUGE thank you to everyone that donated. That money really will make a difference. Now to think about next years venture!

Sian x

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