Sunday, 29 March 2015

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

Wednesday, 25 March 2015

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

Sunday, 22 March 2015

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

Thursday, 19 March 2015

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

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

Sunday, 1 March 2015

Take a trip

copyright: Sian Wootton

Happy 1st of March everyone and Dydd Gwyl Dewi to any Welsh readers. I have convinced myself all week that today was the last day in February and therefore a good day for my last Love February post but as ever time has eluded me and I have no idea what day it is. But hey ho, here we go!

They say that sometimes a break can be as good as a change, and mostly I agree with this. Travelling or even just visiting somewhere new can be so enlightening and teach you a lot, not just about that place but about life and you may well learn some new things about yourself too.
copyright: Sian Wootton
When I was doing my undergraduate degree I lived at home, having previously been scared off by the horrors of a communal kitchen, but what this allowed me to do was to put my money into doing some exploring. And I have to say I'm glad I did; because during these times I learned more about the world and who I was in it. I learned to broaden my horizons and grow in much needed confidence. Mostly I preferred cities as someone who liked having a lot to do and not staying still too long. However as my life has changed I've learned to enjoy the sun and pure relaxation again. It can be so good for us to just really take some time out from the hussle and bussle. Although that can actually be difficult to do at first.

 From an early age I had learned that the universe doesn't owe you any favours, that you are not guaranteed an easy ride and in return I affirmed that if I wanted happiness then that was partly my responsibility to go looking for it. Making the decision to explore a bit more was very much my taking control of my own happiness. And while I might not have travelled far and wide or to many countries (I know I'm not the backpacking type) my experiences  have still helped to shape me as a person.
Sometimes taking oueselves out of our comfort zones but also without the commitment of living somewhere new can be liberating. And it's great to look back years later and reflect on the memories you made.
copyright: Sian Wootton

Recently my Mum and I went away for a few days to visit family in Brussels (having family abroad can be a great reason to help you visit new places,) and whilst travelling with a disability has it's own hurdles (which I will post more about soon, or you can read more in my travel series) it is still worthwhile. Being in a whole new environment and away from the same 4 walls and daily grind did us both a lot of good. Being in a city again was exciting. However it was more bareable with it being February so not at peak season, which when you are in a chair can be a blessing. Of course there is the joy of different food and in Belgium that definitely meant waffles and chocolate, which in itself made sure I was happy. It was great to visit a place actually I had never thought much about going to and that circumstances had led us towards. And although the purpose of the visit was to visit family getting the opportunity to see some of the sites with people that had researched it well to be able to move their certainly had it's perks. Life really can be what we make of it and I'm really grateful for every smile that crossed my face whilst there.
Copyright: Sian Wootton

Travel can be expensive though and just not be an option for many people who have other commitments and money just won't stretch to a holiday. But you don't have to go abroad to explore. You can stay in your own country. Even stay local. I bet there are lots of places on your doorstep that you have actually never been too. You don't even have to stay overnight, go on a road trip or by train. Break away from your normal routine. Act like a tourist and see the world with fresh eyes. Exploring new places can be great if you feel like you are stuck in a rut and living life in a monotonous routine. You can be as organised or unorganised as you like. Whether you have a clear idea of where you want to go and what you want to do there or whether you decide to jump in the car or train and see where the mood takes you. The great thing about the modern world of course is you can always Google your location and it will show you a number of hotels, restaurants and attractions near you to help you make decisions. Or allow yourself to just wander and explore. No maps, no technology; just fully immersed in a place and what it has to offer. Sometimes that break from technology can be good. Focusing more on whether you are having a good experience and not an 'instagrammable' moment. Perhaps that makes a great motto for travel and 'adventure'. Live it and breathe it. If you learn some valuable lessons along the way too then fantastic.

It can also be a great way to learn more about other people. Having the confidence to travel with someone can mean putting a lot of trust in them too. Personally, I know that there are only so many people I'm comfortable enough to let see me freak out on a plane. But exploring a new place together can make your experience even more fun. Again, whether that's full on travelling or just a road trip. The break from the norm will reveal new things about each other, some good, some maybe not so good; it's certainly a learning curve. As long as you have fun and enjoy the experience, even if bad things happen, just look for those silver linings and go make some fantastic memories.

Where would you love to travel to? Or is favourite place to visit at home or away?

Sian x