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

To find out more about the Princesses and M.E event see my Team Princess 2015 blogpost. You can donate to me on
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

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