Wednesday, 18 May 2016

Princess for a day

This is just a quick post to update you all with news from this year's M.E Awareness campaign, and share photos of my chosen outfit for The Princess and M.E's fundraising campaign.

I was very excited this year to dress up as I had chosen my favourite princess - Princess Leia Organa from the Star Wars film. Not only is she a kick-ass space princess, but she is also a general and leader of the rebel alliance. She also has great hair.

The real Leia never got her own light saber. Boo!

So here I am in all my finery. the light saber was super-imposed unfortunately. Probably for the best as I get a bit clumsy when I've overdone things. I posted this, and several other photos that you can see below, onto Facebook, Twitter, and Instagram along with my justgiving link and the response was amazing. I even managed to get the approval of Mark Hamill, who plays Leia's brother Luke Skywalker. I tweeted him the photo and he liked it, which means he must have thought I made a pretty good princess! Needless to say, I'm just a tad excited about that!

The actual Luke Skywalker liked my tweet!

Over the course of the month that my justgiving page has been active, I have managed to raise just over a thousand pounds! I am so unbelievable grateful to everyone who has supported me and donated to my Princess appeal. The money raised has gone to Action for M.E, a charity based in Keysham (just down the road from me) who have just announced the funding of two new UK research projects. Perfect timing!

The amount raised was out of this world!

So, once again, THANK YOU to everyone out there for cheering me on and helping me raise such a phenomenal amount. There is still plenty of time to sponsor me, if you haven't already, or even sponsor one of my fellow princesses via our Team Page. As a Team, we have been raising money for a whole host of M.E charities so you're spoilt for choice really. My last thank you must go to my fellow princesses, and Queen Sian in particular for putting in an amazing amount of effort to keep the whole shebang going. Sian is a poorly person, just like myself, yet she manages to organise all the princesses with grace and style. Thanks to her and her original idea of dressing as princesses, we have managed to raise a great deal of money and awareness over the last few years, as well as forge strong friendships within the members of Team Princess. it feels great to be able to make a difference even if we're too poorly to leave our beds. Here's to next year - I have absolutely no idea how I shall top this, but I shall try my best. 

How does this thing even work?
Hair game is strong with this one.
I discovered my photo editing app has a Star Wars section so I couldn't resist.

Even space princesses need a break.
The real Princess Leia in all her glory.

Sunday, 1 May 2016

May the Force be with me.

I've always liked May. Two bank holidays, warmer weather (supposedly), flowers blooming all over the place - what's not to love? Growing up, it was also a time of school fairs and dancing round the maypole. I remember being in the local newspaper because I danced round one at Junior School, and somewhere I still have the competition-winning programme cover I designed for another year of the school's May celebrations. 

Since becoming ill, May has taken on another significance. It is M.E. Awareness month, which for obvious reasons is a cause of great importance to me. International M.E. Awareness Day itself falls on the 12th of May every year, so chosen because it is Florence Nightingale's birth date. How many of you knew that the Lady with the Lamp was severely affected by M.E. for a large proportion of her life? I certainly didn't until I became ill with it myself.

This year, I am as usual raising money as part of Team Princess by dressing as a princess for the day. You'll have to wait and see which princess I have chosen but I may drop a few clues over the next week or so. Two years ago - the first year I dressed up for Princess Day - just putting on my outfit and posting photos online was enough to use all my energy and leave me suffering the Post-Exertional Malaise that is characteristic of my illness. I am very pleased to report that since then, the gradual improvements I have been making mean that this time, I have a lot more to contend with than pretending to be Sleeping Beauty for the day. This time, May is going to be a month of milestones and I am going to need every ounce of luck and strategic planning to get through it. Still, I like a challenge. 

It starts off gently with a visit from the hairdresser tomorrow. I need to smarten myself up ready for all the gadding about I am planning to do. Then May the 4th is Star Wars day so I shall swan around in my Hannah Solo dress for the day, pretending my hairdryer is a blaster. The following week, the real business gets going. There's a birthday celebration for fellow princess Ali, so sparkle and glitter is compulsory. Then comes Princess Day on the 12th and the unveiling of this year's outfit. Normally that would be enough for one week, but foolishly perhaps, I have arranged my first trip to the dentist in several years for the following day. That's right. Friday the 13th. What could possibly go wrong?

Anyway, my teeth are in desperate need of a going over, and this is going to be a huge step for me, what with the traveling there, the unfamiliar surroundings, the bright lights and noises of the machinery. I'm tempted to say that if I raise enough money then I'll go dressed in my princess outfit. I'm going to look odd enough in my shades and ear defenders so I might as well go the extra mile of ridiculousness. Providing I survive the experience (debatable) then that gives me some much-needed time to recover before my next major milestone because at the end of the month, I am going on holiday. That's right. Mostly housebound mook will be on tour for the first time in about 4 years. I will be leaving the house for longer than a couple of hours. I will be staying somewhere that isn't my all-too-familiar boudoir. I am getting out into the big wide world and I can't wait! 

Now, before you get too excited, let me put a little perspective on this. I am still supremely ill. I manage so well day to day around the house because I don't push myself to go to places that will over-stimulate my highly sensitive brain and body. Hence, my 'holiday' involves travelling less than an hour away to Center Parcs, where I shall probably spend the next five days zonked out in a different, more expensive bed whilst the husband runs off into the forest to fire arrows and shoot pretend pigeons. It's hardly a grand world tour, and a whole world away from my last proper holiday, which was my honeymoon five years ago to the Dominican Republic. Still, for me and my poor little body, it is every bit as epic an adventure as an eight hour flight half-way around the world. It is going to cost me the high price of pain and suffering, probably whilst I am there, definitely when I return. Despite this, I am so very excited to even be able to contemplate going. I am more than happy to pay that price for a taste of freedom and a change of scenery, even if it is just the view from a very different bedroom window. Of course, I may need reminding of that fact afterwards, when the inevitable recovery time has me bedridden and bewildered, but even so, I will be happy. Happy but hurty, because I will have achieved something I thought I might never be well enough to do again. And then looking forward, once I have managed this trip, maybe I can plan to visit my parents by the end of the year? That would be nice. I haven't made it back home for several years. It would be nice to save mook ma and pa the car journey down to see me.

So yes, expect big things this May - but not so much for June, where I shall largely be wallowing in a pit of ow and ugh. I shall need the force to be with me every step of the way, and if you wish to m'aidez this May Day, you can sponsor me to become a princess and raise some money for local charity Action for ME. Even if you can only spare a pound or two, it is all so very much appreciated. If being ill has taught me one thing, it's that even the tiniest of steps is still a step forward. I'd love you to help me keep taking those tiny steps towards getting well.

You can visit my justgiving page to sponsor me or visit Team Princess' team page to choose one of the many other M.E. Charities we are supporting this year

And we are also raising money for the following charities that aren't yet available through justgiving.

Monday, 21 March 2016

My Team Princess interview for Queen Sian's blog.

The wonderful Queen Sian over at Me, Myself amd M.E is running a series of interviews with members of Team Princess ahead of our fundraising campaign for M.E Awareness Day in May. Below are my answers to Sian's questions which are also available to view along with other, forthcoming Princess interviews on her blog.

Last year dressed as Sleeping Beauty.
Interview with Princess Mookpixie
Member of Team Princess since 2014

When were you diagnosed? And were you ill for long before then?

I was diagnosed in October 2012, just over a year after first becoming ill.

What did you do before you had ME?

I was a Reception teacher.

How did ME first present itself in you?

Chest infecton/sinus infection that wouldn't go away, followed by complete bodily melt down.

What is the biggest thing that you miss that ME has stopped you from doing?

Dancing and listening to music, reading books, independence, walking, being able to go wherever I want whenever I want...... to name but a few.

How do you remain hopeful and/or happy?

I remind myself of the many reasons I have to be grateful. I also think back to how I was at my worst point and celebrate how far I have come both physically and mentally. Getting upset or angry will not change my life or make me well so I  am determined to enjoy myself as much as my limited energy will allow. I laugh more now and feel happier and more confident about myself than I did when I was healthy. 

What were your reasons for joining The Princesses and ME/ Team Princess?

It just seemed like a fun thing to do and a great chance to make friends. 

Do you have any specific plans for what you are going to do for the event?

I have my costume at the ready although I still need a few accessories. I'm thinking outside the box this year because I'm not really into princessy stuff. I'll be active on social media for the day as I'll be on my own so won't be able to go out.

If you had 3 wishes what would they be?

For me and my spoonie chums to get well.
A cure for ME.
To be happy.

NB: Sian pointed out that most princesses would probably wish for something very similar so I'd like to add that I'd like to win the euromillions so that I can build 'Spoonie Mansions' - a respite home for chronically ill folk comprising of a main communal building, individual chalet living quarters for privacy and quiet, personal butlers, and golf buggies for transportation around the complex.

Which Disney Princess do you most relate to?

I'm not really into Disney and relate much more to badass swashbuckling princesses. If I had to choose a Disney princess, I'd go for Jasmine from Aladdin because she sneaks out of the palace dressed as a commoner so she can have adventures.  

You'll have to wait until 12th May to find out which princess I'll be dressing as this year. I can't wait to get my princess on!

One year gone.

Exactly one year since she left us, the embroidery my Nanna left to me has just gone up on my wall.
For my entire life, it hung on her dining room wall and now it's up on my wall, I think it has finally hit me that I won't get to see her again. The photos really don't do it justice. It was sewn by a distant relation long before I was born but the colours are still vibrant and the stitching is beautiful. What makes it even more special is the sticker on the back, where my Nanna wrote my name as a reminder that this was one day going to be my picture. I'd rather have my Nanna back but it's some small comfort to have my name there, written in her familiar handwriting. I miss her so very much.


Under the cherry tree,
Memories of my Nanna and me.

Homemade soup for lunch
With the crust from fresh bread.
Electric blankets turned on,
Hot chocolate before bed.
The teasmaid to make you
Your tea every day.
Now the house, it lies empty
The green tiles are grey.

You were always there for me
But it's time to move on.
A house isn't a home
When the heart of it's gone.
I'll remember you always -
You'll live on through me
Like the blossom each spring
On your own cherry tree.

© Charlotte Green