Princess interview with Princess Emma



Copyright: Emma's Looking Glass
www.emmaslookingglass.com

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

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