Me, Myself and M.E: charity

Showing posts with label charity. Show all posts

Tuesday, 12 April 2016

Make way, make way for Team Princess 2016

We're back!! And ready (as we can be) to take on M.E awareness day 2016 (Thursday May 12th) and build on the amazing achievements of the past two years. Team Princess have raised over £10,000 for M.E charities in the UK and Australia through our The Princesses and M.E events. That has gone towards funding biomedical research, drug trials and all the great services these charities offer to help support sufferers and their families. As well as helped to raise awareness for this much misunderstood illness.

Firstly who are Team Princess and what is The Princesses and M.E event?

Team Princess are a group of M.E sufferers and supporters that become Princesses for the day on M.E awareness day to raise awareness and fundraise for M.E charities. Individually each Princess is admirable, courageous, strong and brave. Even though they might not think so themselves. Facing adversity with optimism. As a group we're a sisterhood (including the men) that want the best for one another. Getting each other through the worst days and cheering for them on their achievements.

The Princesses and M.E event is held on May 12th, where members of Team Princess become Princesses and share photos to social media using the hashtags #teamprincess and #theprincessesandME. All in the name of raising awareness and raising money to help give sufferers support and hope. More details on how you can take part this year are below.

When I first had the idea I wanted to not only fundraise and raise awareness but also celebrate some of the fantastic people that I had got to know that shared a diagnosis and soon became friends. People who left me in awe of their determination, their strength, positivity in the face of adversity and their kindness. They were princesses in my eyes.

But I think the word Princess can conjure up images of diva strops (that's the illness not us), of being delicate, fragile and girly. That they are helpless and in need of rescuing, whisked off into the sunset to live a fairytale life. Yes at times we are helpless and feel no one can offer any genuine help, until rescue comes in the shape of a cure or at least effective treatment that allows us to regain a life we can only dream of. But what I see is far from fragile, helpless and hope-less, I see strong people facing adversity with courage and even humour. They're the kind of people that you want to learn from and get to know more. They're Princesses.

This year we want to ensure that that message doesn't get lost. That people don't just look at the photos and think "oh how pretty you look as a Princess." But see the reasons why you are a Princess and that for all you cope with you more than deserve to be a Princess for a day.

So on Thursday May 12th if you wish to join Team Princess and our The Princesses and M.E event what you need to do is:

1) Get in touch and let us know you'd like to take part. Either comment here, Facebook, Twitter or Instagram. Links to which are at the end of this post.

2) Set up a justgiving or btmydonate if you wish to set up an individual fundraising page. This is not compulsory and because many sufferers are too unwell to set up their own fundraising pages and keep up with them group fundraising pages for a number of charities have already been set up, to make things even easier should you wish to help Team Princess' fundraising campaign. You can simply share the links,(please note not all event pages for btmydonate have been set up yet but will be added as soon as possible). Here are the links (simply click on the page to go to the page):

Justgivng
Justgiving Team Page
Association for Young People with M.E
Action for ME
ME Association
Invest in ME
ReMEmber
ME Research UK

BT mydonate
Smile for ME
Hope 4 ME and Fibro Northern Ireland
Tymes Trust

I've included more details about our fundraising campaign below. And a guide on how to set up an individual page is available here http://howtodealwithme.blogspot.com/2016/04/how-to-set-up-individual-fundraising.html

3) On May 12th dress up as a Princess. Dress up as much or as little as you like, or are able too. Over the years we have had full costumes, rewearing of wedding dresses, wearing a gorgeous dress you already have, Kate Middleton fashion inspiration, pyjama princesses or simply wearing a crown/ tiara. And let's not forget our men in their full Princess attire. Remember to put your health first and if you are too unwell to dress up on that date then of course you can choose another date should you wish or prepare your photos in advance. The point is you're a Princess regardless of what you are wearing. It's not a competition. Even if you simply use an app on your phone like snapchat or pic collage to add a crown it will still help make a difference. And any men that wish to take part but don't want to dress up as a Princess then being a Prince is great too.

4) On Thursday May 12th (or another date if you are too unwell) share a photo of yourself as a Princess to social media and use the hashtags #teamprincess and #theprincessesandme Be sure to post to our Facebook page too.

3) Alongside your photos write: "Today is M.E awareness day and to help raise awareness I've joined Team Princess. I'm a Princess because..."

Post about the characteristics you share with well known Princesses. Who if you look beyond the girliness you'll find stories of bravery, courage and fighting for what they believe in. Qualities that show you're strength and even your sense of humour. Here are some examples:

I ride around in a carriage/ noble steed. Also known as my wheelchair.

I'm in search of a fairytale.

I feel like I could sleep for 100 years.

Just like the Princess and the pea the slightest discomfort means a restless night.

Because I have help to do chores and put on my shoes. Sadly unlike Snow White and Cinderella the animals have not been very cooperative to training.

Like Ariel I can't walk on land and want to be where the people are.

Like Belle you want adventure in the big wide somewhere.

Because I have been locked away from the world but never gave up on hope that one day things will change.

I long for the day a fairy godmother will arrive and tell me there's a cure.

Like Cinders staying out past midnight leaves you worse for wear.

Brainfog means that just like Cinders we're likely to leave things behind.

One of the quotes you try to live by is 'have courage and be kind.'

Because I am brave and face the beast that is M.E each day. And just like Belle as each day passes I am learning to tame the beast and find the beauty that life still has to offer.

Being brave enough to try to change your fate like Merida.

You're a warrior, like Xena or Mulan, but battling against chronic illness.

Like Kate and Diana I champion a cause and campaign for change.

5) End your post with: "Myself and thousands more are desperately hoping for a fairytale, for a magic potion that will help treat and cure this villain of an illness. You can help us achieve that by helping us raise awareness and donating at..."

5) Link to either the teams fundraising pages or your own fundraising page.

And that's all you need to do to be a member of Team Princess. We'll be sure to share your photos across our social media too, to help raise awareness and ensure they reach as wide an audience as possible. If you don't want your photo on a certain social media then please let us know.

Once again this year we want to support the cause as a whole which means supporting and helping as many M.E charities as possible. Here in the UK fundraising pages are set up on justgiving for Action for ME, Invest in ME, ME Association, Association for Young People with ME, reMEmber, ME Research UK and on btmydonate for Smile for ME, Hope 4 ME and Fibro Northern Ireland and Tymes Trust. These will be group pages and be open from April 12th.

You are also welcome to set up your own fundraising page, should you wish to do so, which can be linked to the overall team page on justgiving so that we can keep track of our overall total. Having your own page will be best if you plan to sell or giveaway items in return for donations. If you plan to do this or hold an auction please let us know in advance as there are rules and regulations that need to be put in place which you will need to be made aware of before setting up your page. Also please note that no online raffles can be held due to licencing laws.

Princesses that wish to set up their own fundraising pages are free to choose which charity they would like to support. We also ask that you respect individual members of Team Princess' choice of charity if they decide to set up a personal fundraising page and understand that their decision is based on their personal experience with that charity and the way they have helped them to cope with their diagnosis. However by being a member of Team Princess you are also supporting the cause as a whole, promoting unity and wanting to help as many charities that do so much for us.

Princesses in other countries that wish to take part please get in touch and we can look into how we can help charities in your country too. We'd love to reach as many charities as possible to help sufferers worldwide.

We'll also be supporting a lovely organization ran by an M.E sufferer called Spoonie Survival Kits, which sends survival kits to help brighten a sufferer in needs day. Money will be raised for these through auctioning an item for each charity/ organization, which will be held on our Facebook page www.facebook.com/MEprincesses. Dates for this auction are still to be confirmed.

As recently announced Amanda Carroll's beautiful paintings, as seen above, will also be auctioned on our Facebook page on the weekend of 21/22 of May. Amanda wishes to raise money for the ME Association. Full terms and conditions for the auction will be available to view on our Facebook page.

But wait there is even more information and plans! In the spirit of wanting to create a postive atmosphere and celebrate the kind, generous pillars of strength many sufferers are, the ones we see as real princesses who help get us through the worst days, throughout May we're going to be holding giveaways. Where each week you will be able to nominate a friend(s) (that has M.E) that you think is a Princess and share the love by stating the reasons why you think they're such a good friend/ princess. Each nomination will then be entered into a draw to decide the winner.

There will be four giveaways in total; one on our facebook page, one on instagram, one that is eligible for international (outside the UK) entries and one in which we celebrate our wonderful carers who take so much care of us. The first giveaway, which will be on our facebook page, will start on Wednesday April 27th and they'll be drawn every Wednesday. The rules for each giveaway will be clearly stated with each giveaway announcement. It's so exciting to think about making people feel special and to be giving away prizes that will help brighten someones day.

Finally watch out for our promotional posters and please retweet/ repost/ share them to help spread our message and raise as much awareness as possible.

On our social media accounts we'll also be trying to create a positive space. M.E awareness week can be quite tough for sufferers. As much as it's amazing to see M.E being mentioned so much and people using what limited energy they have to help raise awareness, it can also hard to see so many posts on your social media feeds. It can be very in your face, a stark reminder of reality and all the adversity; that life has not gone to plan. Because as sufferers we know full well the suffering and devastation this illness can cause. It's almost like rubbing salt in the wound. As mentioned it's difficult because awareness needs to happen to reach people outside of the community but if you are in that community it can stir up a plethora of emotions. So we want to create a little bit of a sanctuary. A place you can reflect on personal achievements and strengths. How you've learned to keep a smile on your face. And a place to celebrate others achievements and give them the support and kindness they need.

We're very excited about this years campaign and cannot wait to see how much of an impact we can make this year.

Keep up to date with all things Princess on our social media:

Facebook: www.facebook.com/meprincesses

Twitter: @teamprincess4ME

Instagram: @teamprincessofficial

Thank you for reading, and taking the time to learn more about Team Princess.

Queenie
xx

Tuesday, 26 May 2015

A royal day!

The above photo look familiar? Yes that's me as me. Recreating the inspired drawing Princess Charlotte (the first one not the new baby one) drew of me. May 12th seems so long ago now and yet I am only just getting round to blogging about the big day. In case you are in need of some context and wondering why on earth I have a helmet on my head and I'm holding a spoon, May 12th is M.E awareness day and myself and a group of other sufferers all dress up (as much as we can) as Princesses all in the name of raising awareness and for charity. The event is called The Princesses and M.E a play on The Princess and the pea story about a Princess that could not . As a collective we are known as Team Princess. You can read more in my blog post.

This year Team Princess were able to raise money for every single registered M.E charity within the UK and one in Australia, which to me is an incredible achievement. Our current total is £5858.24 a fantastic sum that will really have a positive impact on the services that the charities are able to offer for sufferers and their families such as helplines, forums, legal advise, leaflets and brochures. As well as helping to fund biomedical research into the illness. Slowly the tide is turning in the M.E world. More research and trials are being done to find definitive answers as to what M.E is. Due to this research one thing is clear, we have more proof than ever that M.E is a physical and neurological illness. Too long has it been wrongfully labelled psychological and not gained the respect it deserves. And it is with due credit to the charities that these studies can be afforded.

Of course raising money is not the sole purpose of this event, our biggest goal is to raise awareness. Within the M.E community we all know too well the injustices this illness has faced and are all too aware that the impact of them mean those outside of the community either don't know about the illness at all or if they do then the chances are they believe the misrepresentation that M.E is just tiredness and not at all serious or deserving of charity. Every time I write a sentence like that an image of me wanting to slap Ricky Gervais comes into my head. I wonder why? ;-) Therefore it's really important that we share the truth. Share our stories. Educate others about the true nature of this illness and the lives it's tearing apart. We deserve to be respected! We deserve hope! And awareness is the key to achieving this. I'd like to believe that the more this illness is shouted about that as a result we will get better funding, an allocated budget of its own to fund treatments and research. Did you see the recent march on the Whitehouse calling for more funding? That day I felt hopeful.

Below are photos of all the members that were well enough to get dressed up on the day (or during awareness week) and share their stories in the hope of one day getting that fairy tale in the form of an effective treatment or a cure.

We were also suppported by mini Princesses who wanted to join in the fun.

Oh and one Frog Prince!

As well as some real life furry mascots that got roped in whether they liked it or not.

There is a pooch under that tshirt

This years event was also tinged with sadness as we remembered a dear friend who sadly passed away last year. Allan wowed us all when he dressed up as a Princess for last years event. It always make me smile when I think of him going to h&m to buy tights that matched his dress. In honour of Allan we all wore something pink to ensure that he was still a part of our team. We were also blessed to have Allan's son Michael and grandaughter Milla (pictured above) join in the fun this year to raise money in Allan's memory.

Princess Jac our Aussie Princess took awareness to a whole new level when she campaigned to get the Adelaide oval lit up blue for M.E awareness. What an incredible achievement.

It's been great to get feedback from our auction too. To hear stories of items being given as gifts. One of our sweet hampers was donated to a special needs school to be used as a raffle prize at their Summer Fair. I think the number of raffle tickets has increased thanks to all the children seeing the hamper in the office and getting very excited. Thank you to Geoff Allen our resident Prince Charming and Aly Bentham our Fairy Sweetmother for making this possibe.

I really could not be more proud of everything we achieved as a team. This group of people and the majority of the M.E community as a whole are the reason I feel more hopeful each day that change is coming. It's hard that so much of the campaigning is patient lead, because of course exertion makes us so unwell. But at the same time it brings out that inner strength, fight and determination, that is so powerful. We will be heard!

I'm so excited already for next year and all ready planning ahead.

Queenie X

(Oh no this will be my last blog post signing off as Queenie until next year. I'll still wear my crown most days though. As should you.)

Saturday, 23 May 2015

Oi, it's time to listen!

Well what a week it was last week (or the week before now)! For those that don't know the 11th - 17th of May was M.E awareness week. A week that saw a patient group use up all their feelings of anger, neglect, injustice as well as their hope for a better and healthier future to raise as much awareness of this dreadful illness as they possibly could. And boy what a fight we put up! As a patient group we know that there are very few people on our side, thanks to decades of misrepresentation in the media and a lack of interest by the medical world. How can it be that an illness that in it's severest form can leave patients extremely disabled and dependent or even fatal gets so little recognition? That millions of sufferers are just left to suffer. Therefore when it comes to awareness week those of us that can, put as much effort as we possibly can into raising awareness and fighting for our cause. So in celebration of all this awareness I wanted to write a post with an overview of some of the campaigns, awareness videos and blogs that played a huge role in getting this illness more awareness during awareness week.

The Princesses and M.E/ Team Princess

Obviously I'm a little biased about this one, because in case you didn't know it's one I organize, supported by a great team of princesses that all want to do their best for the cause. After the success of last years event, Team Princess were back this year. Raising awareness by dressing up as Princesses and posting our photos across social media. We also held an auction on May 12th. You can learn more about the event by reading my blog post, here. This year we raised funds for every registered M.E charity in the UK and one in Australia, something we feel proud to have achieved. Our current total is just shy of £6000. You can see more on our Facebook page.

1 weekend 2 perceptions

Here on my blog myself and my friend Ali from All about M.E, wrote colab blog posts about our recent meet up. Both documenting how we experienced the weekend and how much of an effect it had on our symptoms. We wanted to show how M.E can vary from patient to patient and the different triggers that we have. Obviously us being well enough to meet up at all means we're having a 'good' day but from reading about what our bodies and minds are experiencing during this time, you'll soon learn that good really doesn't mean symptom free. You can read my post here and Ali's here. These posts were also a part of Sally's May 12th blog bomb.

Sally Just ME's #May12thblogbomb

This is a campaign for bloggers to unite and bomb social media with M.E awareness related blog posts. Bloggers write their awareness posts to be published on May 12th, M.E awareness day, and Sally brings them all together on her blog and by sharing across social media. This is the second year of the event and again the response was fantastic from bloggers wanting to share their stories in the name of awareness. Also it's a great way to discover new blogs to read and perhaps develop further friendships. You can see an inventory of all the posts that were a part of the blog bomb here.

Laura and Michael's blogathon

Staying on the blog theme Laura and Michael of lauramichaelandme.blogspot.com are blogging every day throughout awareness month. This is a big undertaking as one blog post alone can take weeks and a lot of effort to write. I'm really glad they are getting a great response. They are also raising money through justgiving for Invest in ME, which you can donate to here. They are also celebrating 2 years of blogging. Read all their posts here.

Meg Says and Hayley- Eszti's M.E awareness video

Meg and Hayley are two sufferers that try as much as they can to advocate for M.E and to speak out on behalf of those that are simply too ill to raise awareness themselves. Youtube is fast becoming a great new way for sufferers to raise awareness and to educate a whole different audience of people that may never have heard of the illness before. Or if they have then they might only have heard the negative things. Meg has a beauty/ lifestyle youtube channel called Meg Says and I believe that in putting an awareness video on this channel allows her and Hayley to really target those who know nothing about the illness and bring it to their attention. I think one of the scariest things when you are first diagnosed is not having known about it in the first place. The more the illness can be talked about and bought to a wider audience the better. You can watch the video here.

M.E awareness video by Leanne, Holly, Natalie, Bridget and Holly Michelle

Another chatty style awareness video made by 5 sufferers talking about the real side of M.E. What it's really like. What it means to have M.E and what that feels like. As well as an overview of how it's diagnosed, a list of symptoms and the few treatments that are currently available. There's also a section on the things people say to M.E sufferers born out of the widespread ignorance about this illness. I particularly liked how they ended the video by saying " I have M.E but M.E doesn't have me" and how they were now stronger and braver than ever for all that they are facing. Go ladies! That's so true. We are warriors. You can watch the video here.

#NowyouseeME

This was a social media campaign by The Association for young people with ME. It involved posting selfies along with #nowyouseeME to show the faces of M.E and to help make M.E more visable because all too often M.E is only seen behind closed doors. Given we are too sick to open those doors the majority of the time. This could be a good or a bad day selfie. You can also donate to them by texting AYME01 and the amount (£1, £3, £5 etc) to 70070.

Blue Sunday

Oh Blue Sunday, one of my favourite things about awareness week. Why? Simply because it involves cake. Blue Sunday was founded by my dear friend Anna who writes the blog Me, myself and I and has just celebrated it's 3rd year. Anna wanted to hold a tea party to help raise awareness and to fundraise for the ME Association, however she was aware that by doing so she could be alienating her friends that also suffer with M.E as they would be unable to attend. This is when Anna had the idea of a virtual tea party. Where she could document the events from her tea party but also ask people from all over the world to join in by simply enjoying a drink and a tasty treat, from the comfort of their own homes/beds and posting a photo to social media using #bluesunday. Again uniting sufferers and breaking down the isolation this illness often brings. Those that wished to could also contribute a donation of what they would usually pay for a drink and cake at a coffee morning or cafe to her justgiving page, which you can view here.

Please note that these are just a few of many campaigns. Many people have done sponsored walks, rides, cake sales and dyed their hair blue all in the name of awareness and charity. Of course all this awareness is incredible for our cause but it being so prominent has of course hurt too. Being reminded more than ever of the horrors of this illness and how betrayed we feel. Then of course there's the post exertional malaise that is racking the bodies of those that have campaigned. However it certainly has not all been in vain. Thanks to everyone that campaigned in any way they could, even if it was simply by sharing an article or retweeting a link, more people now know the truth about this illness. An incredible amount of money was raised for M.E charities to help them to continue to offer the vital support they give sufferers. A propotion of the money raised will also go towards research, on trials to discover biomedical evidence that will give us much needed answers, an idea of what treatments will be effective and one day hopefully a cure.

A big huge thank you to everyone that campaigned and supported a campaign.

Sian

Sunday, 10 May 2015

Princess interview with Princess Emma

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

I was diagnosed by a hospital consultant in June 2010 but I had been extremely poorly since December 2009.

What did you do before you had ME?

The year I got ill felt like the start of my life, I gained self confidence, had fun with my friends and a summer job filling in for an opair. After finishing my A-levels I went to uni at the London College of Fashion which was a 3 hour round commute. So I was a very busy girl!

How did ME first present itself in you?

In September 2009, one week into uni I had a really bad bout of sinusitis. I felt so awful that on my 19th birthday I was in bed by 7pm. It lasted about a month, then a week after being well again I had a flu jab, and after that is when I noticed sometimes was really wrong. Apart from feeling flu-like the first most worrying symptom was the agonising pains in my legs. It's only now when I look back that I see that earlier that year I had a few symptoms when I was dealing with finishing my A-levels. I would go shopping for art supplies but get bad headaches from the lights in shops, it seemed to stop over the summer though.

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

Being a normal adult, finishing uni and being independent. All the milestones healthy people have the opportunity to take, first proper job, moving out, travel etc. I depend on my mum and family so much I feel like a child at times. It makes me sad to think how much I've missed out on.

How do you remain hopeful and/or happy?

I've always believed that I will get better. That thought has kept me going. I try to take every day as it comes and generally have a positive outlook if I don't think too hard about my situation. My mum and my cats, my friends and online friends help so much. I do struggle a lot with the boredom but being able to focus on my blog helps that.

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

I've always wanted to fund raise for ME Research UK and raise more awareness, last May I discovered Team Princess and loved the idea which is why this year I'm joining in. I love how it's something we can do without leaving home if we can't.

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

I'm planning on taking blog photos of my princess outfit this week in a beautiful local location. I'm so excited about sharing my dress and tiara or should I say tiaras! I also want to explain the illness more on my blog. Lastly I have been making personalised original watercolour illustrations to sell which has been fun.

If you had 3 wishes what would they be?

1. Firstly that anyone who suffers with a chronic illness would wake up tomorrow feeling amazing, healthy and free of pain.

2. Secondly for everyone in this world to get along!

3. (Thirdly for 50 more wishes, with reminder when getting low!!) but if that's not an option I would wish for my friends and family to always be healthy and happy.

Which Disney Princess do you most relate to?

Rapunzel - I feel like I'm locked away by this illness but able to watch everyone else live.

Thank you Emma for taking the time to complete the interview. You can learn more about Emma on her blog Emma's Looking Glass. She is fundraising for ME Research UK and you can donate to her at
https://www.justgiving.com/emmaslookingglass/?targetdevice=desktop.

I hope you have enjoyed this series of Princess interviews. Thank you to all that took part and helped raise awareness by sharing your stories. You can keep up to date with all the latest Team Princess news, on our facebook page www.facebook.com/meprincesses. On May 12th we will be running an auction of some great items to help us raise money for our chosen charities. There are some great items on there so be sure to take a look. Bidding opens 7pm Tuesday 12th May. You can also support us on our justgiving page, http://www.justgiving.com/teams/teamprincessall donations are greatly appreciated and mean the better chance of a fairy tale for all of us Princesses. We want a cure not a curse.

Thank you again

Queenie x

Thursday, 7 May 2015

Why I'm fundraising for AYME

Today's post is all about why I made the decision to choose the Association for Young People with ME to fundraise for as part of The Princesses and M.E event. Although in saying that I also want to highlight that although I have chosen this charity personally, as my justgiving charity, I have no prejudices against the other M.E charities out there. Far from it. These charities are a much needed lifeline to us sufferers and our families. The fact that as a group we can support every registered M.E charity in the UK and one in Australia through this one event is an incredible achievement and something I feel very proud to be a part of.

AYME is a charity that actually I have not previously had much to do with. Mainly for the obvious reason that I'm not classed as a young person anymore. The majority of the time being at the centre of this illness's cruelty and seeing all the aids I have around the house I feel a lot older than I am. Zimmer frames are only for the elderly right? However there are far younger sufferers than me relying on these aids to help them. Illness and disability are not just the burden of the elderly. Even though stereotypically we associate them together.
When we think about youth, we think of health and energy and that feeling of having the world at your feet. Of course we all know that severe illness can strike at any age. We might know people who have or have lost a child to cancer, cystic fibrosis or muscular dystrophy. However these are illnesses that are well recognised or the site of a wheelchair makes them an automatic symbol that something is very wrong. It fills us with a strong sense of injustice. And I think the word injustice is a strong candidate for why I chose to fundraise for AYME in particular.

I could literally cry when I think of the injustice of this illness as a whole, in fact I do regularly and I let myself cry and get angry because feeling those things when life is unjust is normal. This illness is relentless and cruel, literally debilatating. What makes it all the more worse is that there is very little that can be done to help in the form of treatment and we're a good while off a cure. Therefore you often feel like you're basically stagnating. You can manage some of the symptoms somewhat with medications but overall you are left at a stand still and have no where to turn to for help. Because there is very little help. Not enough biomedical research has been completed to start giving tangibe solutions. And medical professionals are not educated sufficiently about the illness despite seeing hundreds of patients with the condition. It can vary greatly between GPs and even so called specialists. Finding someone that will believe you and give you the correct advise can be a struggle and every time you see someone it can feel like a big gamble. Leaving thousands of people lying in dark bedrooms in pain, for days, weeks even years on end. Some so bad they need to be catheterized and tube fed. Their sensitivity to light and sound so strong it can cause physical distress.

As an adult this is hard enough to deal with. Generally people of my age have full time jobs, morgages and children. They have independance and lots of choices and options. Honestly, I would love to be where most of them are. Grumbling that Monday morning has come around too fast after a great weekend of socializing and going out. Dragging myself to work on a dark morning to do a job that they might not love but do to pay the bills. Then coming home tired after a hectic day but still able to drive home, cook tea, do some chores and get ready for bed. Or even go for drinks on a Friday after work. Okay, I have always been of the opinion that a career and a pashion combined is ideal and that's what I had. But right now I crave that normality that so many people take for granted.
When I think of people that are younger than me, young adults, teens and children with this illness it devastates me. They should have an abundance of energy and be looking forward to a future full of possibilities. Rather than feeling that they will be stuck in this child like state for the foreseeable future. Wondering if they will ever get to experience the rights of passage most of us in wealthy countries experience. Your first day at high school. Your first disco. Graduating highschool. Going to college. Your first relationship. Learning to drive. Going to University. Getting a job. Your first pay packet.

I have some personal experience of being an ill teen. Not with M.E but something else. What was different about my situation though was that I had a recognised condition. With M.E as many people know, it is an illness that far too many don't believe is real. Or if they do that it's not possible for children to have it. Casting so much doubt on the patient and putting them and their families through turmoil. I've heard so many stories about schools not helping make things easier for them to manage some schooltime. Concerned about their attendance record and the effect that has on the school than health. What makes this harder is the struggle to get a proper diagnosis, which means that the school have less understanding. Sadly a lot of doctors believe their illness is psychosomatic and therefore refer them to psychologists for treatment. Sadly, some parents have even had to battle social services, told that if their child does not show signs of improvement or up their school attendance then they will be put into care. That the parents are a danger to their child and cannot look after them to the detriment of their health. Some young people have even been locked away in mental health wards to cure them. When in reality this has made them far worse. Read my post about a young Danish woman called Karina Hansen for more information. I cannot begin to imagine the horror of trying to protect your sick child and have to fight to keep them when all you have done is nurture them. Watching their child become shadows of their former selves, old before their time. Having to treat them like babies again.

This is why charities like AYME are so important. They provide a wealth of info on their website for a broad range of people to gain information about the illness. They help children, teens and young adults to find others like themselves and to chat securely. Offering them a chance at friendship with people that will not judge them and break the isolation associated with living with this chronic illness. As well as those closest to the sufferers, to communicate with others in the same situation. AYME also provide information for parents/ carers need help with all kinds of matters from trying to understand what their child is going through, how they can best help them and acting on their behalf. To help with getting their school to understand the situation and how they can make suitable adjustments. And sadly help in those dark times when legal advise is needed.

Donations made to the charity allow AYME to provide these much relied upon services to young sufferers. They fund the information and helpline telephone and email service, as well as National Support Workers that provide help for sufferers and their families in crisis with 24/ 7 emergency support. As well as support a team of volunteers that help support others with ME, they can even use their experience to gain recognised volunteering awards.

To find out more information about AYME or to become a member visit their website www.AYME.org.uk.

To find out more about the Princesses and M.E event see my Team Princess 2015 blogpost. You can donate to me on www.justgiving.com /Sian-Wootton1
Or you can text AYME51 and the amount in £s you wish to donate to 70070. It would mean the world to me.

Sian x

Sunday, 12 April 2015

Team Princess Justgiving how to

Source

Finally, here are the details of how to set up your justgiving page should you wish to fundraise as part of The Princesses and M.E event, to help raise money for the charities that support us during these hard times. Most the stages can be completed via the mobile version of the website, however you will need to use the full version of the site to page your page more personalised, as pointed out in the steps below. If you are on your mobile simply click use full site. The following info can also be transferable to other fundraising sites, such as the Australian everydayhero, although the steps will inevitably be different. Although I've not had chance to look through the process on these sites, please do give me a shout if you need any help.

1) Visit www.justgiving.com and click get started. You will then be prompted to log in if you already have a just giving account, or you can create a new account. Alternatively you can sign in via facebook. Or download the free justgiving app.

2) In the search bar type in the name of the charity you wish to support. Remember you can choose from:

ME Association
Invest in ME
Action for ME
Association for Young People with ME
ME research UK

3) Select fundraise

4) On the next page select personal challenge

5) On the next page select an appeal for a charity under event type drop down menu

6) Event name The Princesses and M.E

7) Event date 12/05/2015

8) Click no the event is not being partially funded by your charity

9) Create a URL address to your page. This will be the link that you use to direct people to your personal page so for example jusgiving.com/princesssian

10) Click create your page

11) Upload a profile photo if you wish

12) Create a title for your page. Use your name and The Princesses and M.E so people know it's your page

13) In the I am... part write " Dressing as a Princess for M.E awareness day" because "M.E needs more recognition and awareness"

14) If you wish to set a fundraising goal amount you can, remember though every penny is great and not to put too much pressure on yourself.

15) Story

Copy and paste the following after Thanks for taking the time to visit my JustGiving page... Non sufferers will need to adapt the wording to suit them. Also adapt to make it more personalised should you wish. Also if you are in a different country you will need to change the statistics.

As some of you will know I suffer from a chronic illness called M.E a neurological illness that has dramatically changed my life.

This year I am joining The Princesses and M.E, a group of M.E patients and supporters that are hoping to raise awareness of M.E and fundraise for the charities that do such a great job in supporting patients and those close to them. On May 12th, M.E awareness day myself and other sufferers will be dressing as Princesses and hoping for a fairy tale.

Our ultimate fairy tale would be finding a cure for this illness that has locked us away from the world. That would be an absolute dream come true. However to do that we need to raise as much awareness as possible, educating everyone about the true nature of this illness and the disabling nature it can have on the lives of sufferers and those closest to them. There are more than 250,000 diagnosed cases in the UK alone. 250,000 lives that have been altered drastically and 250,000 who are waiting for an effective treatment, better consistency of information from health care professionals worldwide and of course the chance of a cure to come charging our way.

This year I am fundraising for (insert name of your charity) I chose this charity because of the great work they do to support M.E sufferers and raise awareness. They are a voice for the vulnerable in a world of much misunderstanding and prejudice against M.E patients.

16) Here you can list other initiatives the charity you have chosen do, and also the reasons why you personally chose them and anything else you are doing to fundraise. However on the full version of the site visitors to your page will see some text from your chosen charity about who they are and what they do.

17) Sign off your story with a thank you.

18) Keep in the paragraph about Justgiving being safe etc

19) That's it! You have created and personalised your own page. You can add further photos, videos, updates and even choose a colour scheme for your page on the full version of the site by clicking edit my page.

20) You can also personalise the thank you messages that donators receive when they make a donation, thanking them for their generosity. You will need to be on the full version of the site for this and click on edit my page.

21) You can also set up a text code should you wish to make things even easier for people to donate. Learn more about how to set up a text code here.

20) Link your page to the team page, which is www.justgiving.com/teams/teamprincess simply click on join team.

21) Share your page on social media. Especially on May 12th alongside a photo of you in your royal attire. It's as easy as clicking the share buttons. Bloggers you can also create a button that can be displayed on your blog that links readers to your justgiving page. Again make sure you are using the full version of the site.

Also any Princesses that enjoy crafting and making things who would be interested in making something to auction on the day please get in touch. We will be running several auctions of things made by members of Team Princess on the Facebook page on May 12th. Again with the highest bidder donating to the makers chosen charity. Contact me to learn more.

I hope this post has made setting up your pages easier and hopefully saved most of you a few spoons but any questions then please ask.

Queenie xx

Thursday, 12 March 2015

Team Princess 2015

It's time to start polishing those tiaras ladies (and gents!) because Team Princess are back for more this year. I made the announcement a few weeks ago and have been getting some great responses so far and lots of people wanting to know more. So it's finally time to let you in on all the details for this years Team Princess and how you can join in or show your support.

Team Princess aka The Princesses and M.E started last year after myself and a group of friends had compared ourselves to some Princesses of the Disney/ Fairytale variety. I have to say some are up there with Princess Kate too, and that's no bad thing at all you goddesses. However back to fairytale world, some of the similarities included:

Sleeping for a very long time like Sleeping Beauty

Being really uncomfortable in our beds and the slightest things annoying our conditions like the Princess and the pea

Feeling like we've been locked away in a tower like Rapunzel

Wanting legs that work like Ariel (find me Ursula now!)

Being out past midnight is way too late for us to stay out like Cinderella and just like her brainfog would probably mean we left something behind

We have a large propensity for hope

The bed head of Princess Anna from Frozen (anyone else love that moment and think hey she's just like me)

And we are in search of a fairytale

However for us that doesn't mean being rescued by Prince Charming; although he's welcome to come knocking. Our ultimate fairytale would be finding a cure for this illness that has locked us away from the world. That would be an absolute dream come true. However to do that we need to raise as much awareness as possible, educating everyone about the true nature of this illness and the disabling nature it can have on the lives of sufferers and those closest to them. There are more than 250,000 diagnosed cases in the UK alone. 250,000 lives that have been altered drastically and 250,000 who are waiting for an effective treatment, better consistency of information from health care professionals worldwide and of course the chance of a cure to come charging our way.

Last year Team Princess raised over £4000 for the charity Invest in ME, a charity that is very much at the forefront of trying to find tangible answers through biomedical research, drugs trials, plans for a centre of excellence. This felt like such a huge achievement for us all, especially considering the majority of us are mostly bedbound/housebound. What's more in doing so we created closer bonds with each other, creating a real sense of sisterhood (and Allan), friendship and team work. Without these bonds life would be much duller, much harder to cope with but having people that completely understand and working alongside you to make a change was one of the best achievements.

Moving on to Team Princess 2015. This year things will be a little different, we want to expand on all we achieved last year and broaden our horizons. Whilst above I talked about some of our similarities with fairytales there are many attributes of real Princesses that ME princesses emulate. Princesses are known for championing causes closest to their hearts and for their charitable nature. ME sufferers and their supporters not only battle living with illness and disability on a daily basis but also to be taken seriously. You'd think that having been recognised as a neurological condition way back in 1969 by the World Health Organization would be enough to give the illness credibility but it seems this fact gets overlooked all too often. So you will see that a lot of the time it is the sufferers themselves having to convey the realities of trying to survive with ME, not medical professionals as it should be, with some exceptions of course.

In the spirit of really wanting to champion our cause as much as possible we want to open up to supporting more ME charities both in the UK and other countries. That way any international Princesses (hi Jac!) can support charities that are making a difference in their countries and will benefit them more directly.

Therefore The Princesses and ME will be a unity of anyone that wishes to take part but within that there will be a number of Team Princess' that will fundraise on behalf of that charity. However it's important to note that there is no competition. To do this, we will be setting up team pages on Justgiving, and similar international sites.

In the UK, on www.justgiving.com the following charities are available to fundraise for:

Invest in Me
ME research UK
ME Association
Action for Young people with ME
Action for ME

In Australia, on Www.everydayhero.com.au the following charities are available:

Emerge
Change for ME
The ME/ CFS society of WA

Please note that the information above is based on the people that I know have already expressed an interest in getting involved. Other charities in other countries are also available.

Also note that fundraising is not mandatory. Understandably, not everyone has the energy to do so. All we ask is that you are supportive of the Princesses that are. However for those that do I will offer as much help as I can to set up pages. Our main aim has always been about raising awareness of the illness and sharing the truth about what it is like to live with it.

So what do you need to do to become a Princess?

1) Declare your interest. Contact me on our facebook page or Twitter @how2dealwithME and let me know if you would like to get involved. Also let me know what country you are from so that I can research other charities and fundraising sites should you wish to fundraise.

2) Start planning your outfit. You can dress up as little or as much as you want to. Totally depending on your health and your wishes. Last year Princess Sami left hospital in a paper crown made by her children. However if you want to use this opportunity to embrace your inner Princess then certainly go for it. You deserve it!

3) Decide whether you want to support a specific charity and which one and also let me know which one you have chosen. I will provide more info on setting up pages very soon, once I have any idea of what charities everyone would like to support and set up the groups that you can join as an individual fundraiser.

4) On May 12th, M.E awareness day, dress up as a Princess, or a Khaleesi if you wish. Those that are feeling too bad on the day please don't push yourselves too much. Health first. Once you are Princessified simply post a photograph of yourself to social media, stating why you are dressed as a Princess and the awareness you are trying to raise of ME using #theprincessandME and #TeamPrincess.

5) Direct people to the fundraising pages of either yourself or other Princesses in Team Princess.

6) Also let me know if anyone would like to share their M.E story as part of raising awareness, either through your own blog posts, which I will link on our facebook page or a guest blog on here. I would love to do a few Princess interviews on here. Also let me know if you are going to share your story with the press.

Last year, Team Princess was made all the more special and comical because ME sufferer Allan Dickinson embraced his inner Princess, or should I say Tywysoges (it's Welsh for Princess), and dressed up, accessorizing with a rather fetching pink wig. Sadly Allan passed away a few months after, and his death affected us all deeply. This year in planning for Team Princess 2015, we always knew that we wanted to honour Allan's memory in some way. First of all, we decided that we would wear something pink, it doesn't have to be the whole outfit, just something with pink on it to represent Allan. Then a short while ago I was contacted by Allan's son Michael, who said that he would like to be involved in this years efforts. Michael doesn't have ME but he is willing to dress up as a Princess for the day to help raise awareness and fundraise for ME charities, with the support of his daughter Milla who will also be dressing up. Of course this bought on lots of tears but it is a privilege to have Michael and Milla as part of the team.

Hopefully this blog post has covered all you need to know for now. I will soon have more information on fundraising and help to set up pages. Any more questions though please do ask.

Keep your heads up Princesses, don't let those tiaras slip.

Queenie xx