Team Princess Justgiving how to

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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

Princess interview with Princess Jac

Today we're going International, to a land down under to speak to our Royal Aussie, Princess Jac. This year as Team Princess are supporting more charities, Jac will be fundraising for the Australian charity Change for ME.

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

May 1992 2-3yrs

What did you do before you had ME?

Student.

How did ME first present itself in you?
Recurrent viral infections including but not limited to upper respiratory, and chest, severe fatiguability and post exertional malaise, new aches and pains, new headaches, persistent sore throat. Some brainfog.

What is the biggest thing that you miss that ME has stopped you from doing?
Career goals. I wanted to be a doctor, ironically enough. And sport. I do miss my sport. And love. It's hard to find romance when you're mostly housebound.

How do you remain hopeful and/or happy?
That's an ongoing struggle. The friends who've stuck with me through a quarter of a century of illness, my mum and my little dogs (three over the years). And finding the little things that I enjoy that don't completely wipe me out.

What were your reasons for joining The Princesses and ME/ Team Princess?
The need to raise awareness as well as funds!

Do you have any specific plans for what you are going to do for the event?
Still in the planning stage.

If you had 3 wishes what would they be?
Health. Love. And woodland animals to help me with house/garden work.

Which Disney Princess do you most relate to?
Personality wise, probably Elsa from Frozen, but looks, Snow White or Belle.

Thanks Jac, for taking the time to do this interview and helping to raise awareness of what life with M.E is really like.

Queenie x

Princess Interview with Princess Emma

When were you diagnosed? Were you ill for long before then? I was officially diagnosed with ME in June 2013. I became poorly in 2005 when I got Glandular Fever halfway through university. I never felt "right" after that !

What did you do before you had ME? Before I had ME I was a primary school teacher. I had been teaching for 8 years.

How did ME first present itself in you?
After getting glandular fever in 2005 I seemed to pick up every bug and virus going including swine flu. I kept going to the doctors as I didn't feel well but didn't know why an the doctors seemed reluctant to help. I would always feel exhausted and aching but at first assumed it was the fact I was a teacher so I forced myself to keep going. I changed doctors and thankfully my new doctor actually listened to me and began running blood tests etc as he felt I had ME. In February 2013 I became very unwell at work and ended up going to hospital. My mum described all my symptoms to one of the doctors and she asked if I had ME.

What is the biggest thing that you miss that ME has stopped you from doing?
The biggest thing would be having to give up my teaching career. Working full time was impossible. I could just about manage part time which I was reluctantly given by my employer who was asked to follow my occupational health report. Sadly I was told I would have to return full time or there would be no job as they couldn't have me work part time (despite other staff being part time due to having babies) so I had to leave. While I miss my friends and the children, there are aspects I don't miss. I had no work life balance and in a strange way ME allowed me to get more of my life back (as crazy as that sounds). I now work in social media and blogging, working part time and from home. A complete change of job and for less money, but I am happier and the job suits my illness.

How do you remain hopeful and/or happy?
I remain hopeful and happy mainly due to the wonderful people I have in my life. My closest friends have been amazing and are always there for me and very understanding of my ME. They often spot I am flagging before I do (I'm stubborn) so they force me to pace myself and they plan regular stops for me if we have a trip out. As one friend said "I don't mind sitting down and drinking tea, we are getting old and it's a great excuse for a natter". What I also love is that they don't see me as their "sick friend". They treat me as they always have done so I feel equal and I am always included. My online friends are also a great support and I love catching up via Instagram etc. My two cats are a great comfort to me too.

What were your reasons for joining The Princesses and ME/ Team Princess?
Apart from the fact I love princesses, I thought it was a great way to raise awareness. I have also made some lovely friends as a result of being part of Team Princess and I hope when our health is better we can have a princess get together.

Do you have any specific plans for what you are going to do for the event?
I will be dressing up as a princess and may attempt photos of different princess eg sleeping beauty, Cinderella etc.

If you had 3 wishes what would they be?

To find a cure for ME so my friends and I could be better.

To get married and have a family.

To be well enough to go on a roller coaster tour across America.

Which Disney Princess do you most relate to?

I always wanted to be Ariel when I was little, but I can't swim so I'd make a rubbish mermaid! I can relate to Beauty from Beauty and the Beast because I am caring and I like to see the good in people.

Thank you Emma for taking part in the interview. You can learn more about Emma and her story on her blog The Adventures of Little Me. This year Emma is raising funds for Invest in ME.

Get in touch if you would also like to join The Princesses and M.E this year and also if you would like to take part in an inerview to share your story.

Queenie x

Princess Interview with Princess Charlotte

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 infection/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.

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.

Thanks Charlotte for taking part in this interview. You can hear more from her on her blog The chronic ills of Mookpixie. This year Charlotte will be supporting Action for M.E and you can donate to her from April 12th.

Stay tuned for 2 more Princess interviews next week. If you would like to take the interview then please get in touch.

Queenie x

Princess Interview with Queen Siân

 

Yes I am doing an interview with myself but I thought I might as well kick off this series of Princess interviews with my own experiences. Lead from the front, as it were. I already have a few interviews from other Princesses to be uploaded soon, however if you want to join Team Princess and do the interview too then let me know. 

 

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

I was diagnosed in September 2011, 4 months after I collapsed and fell asleep for 3 days, needing to be admitted to hospital. However I have had a chronic illness since the age of 14 and suspect that with hindsight the years before I was diagnosed I possibly had mild ME.

 

What did you do before you had ME?

Before I got ME (or definitely knew about it) I was living my dream doing an MA in stage management at drama school and stage managing a production. At times I felt like I needed to pinch myself. I felt so lucky. I had fought some tough mental health battles to be there too and was feeling happier and more confident than I ever had. I used to get quite anxious about going out on nights out etc as I always felt a bit of an outcast with not drinking because I could not tolerate alcohol. But I finally overcame this too at that time (the anxiety not the drink intolerance) and managed to start enjoying what felt like a more normal social life. Sometimes I look back and think what absolute rubbish timing but there really is no good time for something like this to happen.

 

How did ME first present itself in you?

In the months before I had been admitted 6 times in 6 weeks with severe abdominal pains. However with no diagnosis and being told nothing was going to explode I carried on working, getting in at 8.30am and sometimes not leaving until 10pm. I also fell down the stairs, twisted my ankle and a week later got an infection under my eye, causing my face to swell and needing to be admitted before the infection spread to my brain. It was obvious my body was trying to tell me something and I knew I had to try and slow down. However after going to the Summer Ball the next day I felt a real sense of foreboding, rather like the onset of a panic attack when you just feel you on the edge of doom. I knew I had to try and get home and so I phoned a taxi and jumped on the next possible train. I just about managed to stay conscious throughout the journey but as soon as I got into my brothers car I could no longer keep my eyes open. I was like that for 3 days, trying my best to communicate but not having the energy to even open my eyes. My GP came round to the house and did a series of reflex tests non of which I was responding too and so he called an ambulance to take me into hospital. When I was first admitted they were worried it could be meningitis as I was wincing at the lights and had pain in my neck. However after learning that I had been at my Summer Ball they starting questioning what I had taken. A junior doctor mixed up the levels of 2 paracetemol in my system given to help the pain in my neck as being enough to overdose and so of course I questioned all the more, especially with my recent history of mental health problems, and a psychiatrist was called to evaluate me. I felt so scared and upset because they were suggesting it was self inflicted when I was in fact at my happiest and of course I could not defend myself properly. Luckily the junior doctor was soon put right for her error. It was certainly the most vulnerable I've ever felt. They diagnosed it as burn out and suggested I get lots of rest to recover. So that's what I did, only things only improved a little and 4 months later I was officially diagnosed with ME.

 

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

To be honest it's the little things more than the big things. Don't get me wrong I certainly miss being able to work and be able to go to the theatre often. However it's the little things that you have to face every day. Loss of independance is certainly a big gripe. Needing to virtually be babysat 24 hours a day. Not being able to even make your own breakfast or lunch and feeling like a pain in the backside for having to ask others. Then there's the loss of some dignity, having to get help in and out of the bath or shower and sometimes to help you on the commode, or just to lift your pants back up. They're things that I know I have to tolerate to be able to get by but I do certainly have times when I think to myself this completely sucks.

 

How do you remain hopeful and/or happy?

Honestly in some ways I think having had experience of mental health troubles actually in some way helped me to cope with this. I might not have my physical health but I have my mental health in a good condition. Hope, and happiness are two things I've been speaking a lot about on my blog lately. I think most of us are predisposed to just keep on hoping, no matter what life throws at us. We learn to see the good things more than the bad and even go out and make those good things happen. I try to take each day at a time, live only in the moment an to laugh as much as possible.  Plus I have some great people in my life, my amazing family and my spoonie sisters.

 

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

Well I founded it, with the support of some of the other Princesses. I wanted to do something to raise awareness on ME awareness day to show what ME really is and try to get it onto more peoples timelines and feeds on social media. The more people that at least see it, the better. One of the things that a lot of people face when they are diagnosed with ME is "what on earth is that? I've never heard of it." So getting the name out out there is just part of the battle. Also just to show that behind the illness are some very strong women.

 

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

Overseeing everything and being attached to my phone for most of the day, making sure we get our message out there. I'll probably be filled with pride and possibly shed a few tears too.

 

If you had 3 wishes what would they be?

 

★ That a cure for ME can be found and everyone that has it can get better and those that will get it in the future won't have years of suffering
★ To be happy as much as possible
★ To be able teleport/ apparate travelling is so draining and painful. I love it, I just wish it was easier. Then I could see people more often and meet more of my spoonie pals.

 

Which Disney Princess do you most relate to?

It has to be Sleeping Beauty. I have always been a sleeper who loved a lie in. However since getting ME some days I can sleep for 20 hours straight. Although that's probably about all we have in common, I wasn't raised in the wood by fairies or pricked my finger on a spinning wheel, as far as I am aware. I'm probably more akin to Sleepy the dwarf. I would say I'm also a mix of Belle in that I tend to go against the grain and love to have my head in a book; also like Cinderella I'm a grafter and like Rapunzel I go after what I want.

 

I hope you have liked this post and that you get to know a bit more about myself and other Princeses that will be taking part in this series of interviews.

 

Queenie xx