Tuesday, April 21, 2015

Princess for a Day

Every girl dreams of being a princess.  We saw Cinderella recently and I certainly dreamy of having a dress like that

I also love the dresses in Frozen, even though they are not real.  Many kids costume makers are cashing in on those.

And of course we would all love to have "Princess" Kate's wardrobe, even her maternity wardrobe is great.

Anyway, May 12th is ME awareness day and a group of people have dreamt up Princess and ME to raise awareness of the condition and to raise money for research.  The idea is to dress as a Princess and ask people to sponsor you and share pictures of you.  The group has a team Just Giving Page or you can set up your own.  I have my own at Just Giving so I can see how much I raise.  My donations are going to Action for ME, but there are other ME charities that people can donate to if they prefer, including ME ResearchME AssociationInvest in METymes Trust.

On or around May 12th 2015 Emily and I will be dressing as princesses.  As ever with these things my brain is working overtime thinking of all the things I could do eg having a Princess Tea Party with Emily's friends or getting school involved, but would they actually raise awareness as it would just be me doing too much and making myself worse, but people wouldn't see the worse bit.  How do you demonstrate constant fatigue, pain, dizziness, brainfog, sensory overload, insomnia and much, much more. No one sees the hours laid in a quiet dark room as we always try our best around others and pay the consequences in private or at the expense of immediate family only.  

Perhaps I should have a day in bed dressed as a Princess, being waited on hand and foot like a real Princess?  But that isn't me either and it wouldn't make it much for for anyone else.  How do you demonstrate the symptoms to other people without being cruel?  Even if you stamp on someone's foot to show them pain, it wouldn't last.  Or you could spin them round and see how they like being dizzy, but again it would stop after a short time, there is no way of showing what it is like to feel that way all the time and the effects it has on daily life and immediate family.

I know some people are involved with Big Sleep for ME, but actually one of my top symptoms is insomnia, but its good that people who are bedbound feel they can take part and a pyjama day would be much easier than dressing up, or maybe I could get Princess Pyjamas.  Whatever I decide I won't be able to wear it all day as I have school run to do and I am not that brave!  I may do my thing on May 10th as there will be people around to help me get ready and Emily could join in more.

I don't think I will be buying an outfit, I would rather give the money to the charity, so will have to make one up from things I have.  Emily has many Princess outfits, she will be spoilt for choice and I wouldn't be surprised if she keeps getting changed and wears them all, but she has more energy than me, getting dressed once a day is more than enough for me.

Wish me luck and don't forget to sponsor me :-) and if anyone else wants to dress up to show support please do and don't forget to send me your pictures.  I am always complaining that people don't care about ME and that they don't think it is important enough to warrant fundraising or awareness.  I do hope that people will prove me wrong this time.  I know not everyone can afford to give money, but your support and understanding is just as valuable.

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