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

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