Invisible Illness Awareness Campaign.

Hello all :)
Today I want to catch you all up on the various fundraising and awareness events I've been planning with some friends lately

To begin with, on Saturday, months of planning and organising came to a head when University of Gloucestershire's Dance Society held a flash mob to help raise awareness for invisible illness, and in particular, M.E. I teamed up with the Dance Society and a great organisation called 'Fixers' to help make the event happen. In particular I want to thank Chloe Dix, Rosie Mills and Jodie from Fixers for coming up with the idea and to help make it happen. The flash mob was a great success, with people of all ages asking what it was for and why we were doing it. This helped to spread the message of invisible illness and that people of any age can suffer with it. So overall, I want to thank Dance Society in general for wanting to be a part of my awareness and fundraising plans, and for making it happen. When we first talked about it, I didn't dream that so many people would want to get involved, and it means the world to me that you all did. The thing which I am most pleased about, I have to admit, is the fact that ITV have decided to get involved, and ended up filming the whole thing!

This leads me on nicely to my next awareness campaign. Through the flash mob, another idea was sparked off which I'm very lucky to be going ahead with tomorrow - Creating a broadcast piece with Fixers to go out on ITV news. For those people who have been with me since the beginning of this journey, you know that I never expected to be able to send my message across in such a big and broad way. This is such a massive deal for me, because it means I get to be the voice for so many sufferers who don't have the chance to speak out - and to give a realistic view into what living with an invisible illness is like. I realise that I've said thank you a lot in this post already, but I have to give Carrie a special mention... Thank you so much for giving me this opportunity to speak out on TV (eeep!) about a topic which is so important to me, and really does deserve awareness. As part of the piece, I'll be talking with three other sufferers of invisible illness in the hope of opening people's minds up to the idea that there are so many forms of invisible illness, and how it can effect such a wide variety of people - all genders, ages etc. The illnesses we'll be looking at in particular are M.E, Fibromyalgia, Body Dysmorphia, Crohns, and Heart Disease. This broadcast piece is going to be going out sometime in March or April - I shall keep you all posted!

And finally, with my University sports club - Boardriders, we are holding an 80's night at Propaganda, MooMoo's on Thursday 27th, to help raise money for two amazing charities - Cancer Research UK and Association of Young People with M.E (AYME). All of the Boardriders have been such a huge support for me and have become such a big part of my life, so the fact they want to fundraise for my charity is a big deal for me. Cancer Research UK is also a charity which is close to our hearts as a club, so we can't wait to raise money for them too! So I have to say a final thank you to my Boardriders for helping to make this fundraiser happen and for always keeping my spirits up. You're all awesome.

http://www.fixers.org.uk/
http://www.ayme.org.uk/
http://www.cancerresearchuk.org/
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Info on Fybromyalgia - http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Introduction.aspx
Info on Body Dysmorphia - http://www.nhs.uk/conditions/body-dysmorphia/pages/introduction.aspx
Info on Crohns - http://www.nhs.uk/conditions/crohns-disease/pages/introduction.aspx
Info on Cardiomyopathy (type of heart disease/condition) - https://www.bhf.org.uk/heart-health/conditions/cardiomyopathy/dilated-cardiomyopathy.aspx

The Mid-Day Mile and More!

Hello everyone!

It's been a couple of months since my last post, because so much has been going on! Today I want to update you all on what's been happening... It really has been a whirlwind couple to months.

Firstly, I'm very happy to announce that The Mid-day Mile in aid of Oxford Heart Centre was a HUGE success! After months of hard work, we pulled it off and ended up having a fabulous day. Everybody made a fantastic effort with fancy dress, with myself as the Queen of Hearts (seemed appropriate), and really had an enjoyable day with not only the run, but the raffle, cake stall and many other activities as well. I am so proud to say that collectively, we managed to raise £839.30p, exceeding our goal by £500. I want to say a massive thank you to all those who came to the event, donated money, helped out and just generally supported and helped me to achieve this. And to those who missed out this year, don't worry! We're hoping to make this an annual event, making it bigger and better next year :)

Photo of The Mid-Day Mile.

As if that isn't enough, I have some more exciting news for you! A few weeks ago, I got an unexpected phone call from BBC Radio Oxford (I must admit, they had interrupted a pretty good nap I was having at the time, but once I'd found out who it was, I didn't mind so much!), telling me that they'd received the letter my Grandparents wrote regarding this blog, and they wanted to have me on the show, to tell my story! So, yesterday I went on the Malcolm Boyden show and did just that. It is honestly one of the best experiences I have ever had. From the moment I walked in they made me feel right at home. We had a chat about my diagnosis of M.E, what M.E means to me, the cashpoint story (those who have read my first post will understand that one) and my heart conditions. Hopefully those who have listened (should be available on the website, I was on at about 10:10am) will now have a greater understanding of the illnesses, and of me as a person! It felt so good to be able to talk about these issues so truthfully, especially knowing that it will have reached a wider audience. It just felt good knowing that I was going to be heard, because it's been a long hard battle to get people to listen to me at all. This opportunity is all thanks to my Grandparents which really does show that you can achieve anything you put your mind to, if you have enough determination and a good support system around you. So thank you both of you :) Here's the link to catch the show: http://www.bbc.co.uk/programmes/p019xb0k

And finally, the reason why it's taken me so long to post in the first place; I had my surgery!
On the 5th June 2013, I had an Implantable Cardioverter Defibrillator fitted. It's a device that will detect any disrupted heart rhythms, and help shock it back into a normal rhythm if needed. The surgery only lasted about an hour and a half, and after months of trying to decide whether to have it done, it was over in a flash. For a few days it was extremely uncomfortable, but I'm pleased to say that it's healed up well and doesn't interfere with my daily life really at all. (Although, I am looking forward to what airport security are going to make of me next month). Many people have asked whether it's going to improve me much, but the answer is unfortunately, no. It's only there as a back up, to stop me from getting any worse! The only thing that has really changed for me since it was fitted, is that my friends now call me Iron Man. And I have a pretty cool scar, too. So all in all, it could be worse... ;)

I have just one last bit of news for you all. My heart has now improved slightly, and I am now classed as being in Stage 2 Heart Failure, rather than Stage 3! Slowly but surely, nearly a year later, my life is back on track and I feel more like myself than I have done in months.

As ever, thank you all for your never ending love and support... I promise (and I really mean it this time) that you'll be hearing from me soon!

Love,
Lindsey, AKA Iron Man.
x

My Story, from the heart.

Hello world, my name is Lindsey (Lindsey Shorter, hence the blog name!) I'm a 19 year old student from Oxford, and I'd like to share my story with you.

From this, I hope to spread awareness of things that can happen, even though you'd never imagine it. Also, to inspire. Even if I get through to one person on this earth, to make somebody realise that life really is what you make of it, then i'll have succeeded. And, even though it sounds clichéd, to live life to it's fullest, as you never know what lies in your future. Take advantage of what you have and use it to make the world a little easier, a little better, for someone else.   

Step One - My Story

Up until the age of 14, I was living a relatively normal life. Doing well at school, hanging out with friends and most of all, discovering my passion - athletics. However, little did I know that my world was about to be completely turned upside down. It started as you'd expect. Feeling run down, lacking energy, losing motivation and interest in all of the things that I loved. I was starting to feel like I was losing myself. I heard whispers of people saying I was lying, that I was making it up for attention and worst of all - that I was lazy. But, I knew something was wrong. Luckily, I have the most wonderful family who listened and supported me the whole way. In the April of that year (2006) the long process of endless doctors appointments, blood tests and hospital visits began. I cannot even begin to describe how frightening it is as a 14 year old to be told you're being tested for every illness imaginable. Then, at the end of that summer, the doctors had some news. Life shattering, terrifying news, That I have been suffering with an illness called Myalgic Encephalomilites (M.E.). 

On one hand, it felt so good to know that what had been happening wasn't all in my head, that what I was feeling was real. However, I was completely unaware of how complicated and controversial the illness is. I suffered with awful headaches, very painful joints and muscles, nausea, loss of concentration, depression and constant fatigue (to name a few!), yet even after an official diagnosis and everything I was experiencing, I still had to fight to be taken seriously. 

For the next few years I managed to stay in school part time, get my GCSE'S and A Levels, and make it to University. It was tough, as my whole life all I ever wanted to do was sport. But I did what I had to do, ignoring the huge ache in my heart and decided to change the focus of my life completely, to English Literature. 

Now, we're in the summer of 2012. By this time, I had mentally and emotionally dealt with everything and all the changes I'd had to make. That is when I felt it, same as before, my instinct screaming at me that something wasn't right. In the July I was admitted to hospital, the first time. After being treated for a suspected blood clot, I was sent home... Even though my resting heart rate was 142bpm (normal being around 70-80bpm). I felt as though I was going mad, and once again I had to fight to be heard. In the days that followed I couldn't keep any food or fluid down, I was constantly breathless and in pain with my heart visibly leaping out of my chest. One afternoon, things took a turn for the worse. I couldn't feel my arms or legs, I could barely move. So, an ambulance was called. From then on it was all such a blur - bright lights, worried voices, the icy touch of a stethoscope. But, mostly, the same thought going round and round in my head: Am I going to die? At the age of 19, before I've truly had the chance to make my mark on the world, am I about to be torn away from it? 

Luckily for me the doctors knew exactly what was wrong. Unluckily for me, my latest diagnosis was Idiopathic Dilated Cardiomyopathy and stage 3 Heart Failure. Since that moment, all I've been told is what I can't do. Can't drink more than 1.5 litres of fluid a day (Including gravy, how is that fair?!) can't go on roller coasters, can't stop taking my meds (over 20 a day), can't drink alcohol... The list is endless. 

Then I got tired. So sick and tired of being told all my life what I can and can't do. Sick of being told to be careful and sick of hearing the doctors talk over and over about heart transplants and internal cardiac defibrillators, of wheelchairs and crutches. Mostly, of having to change my life, to change me, again. Then I realised, instead of sitting here and feeling sorry for myself, I needed to do something. To show my nurses, doctors, family and friends how ultimately grateful I am for their help, for saving my life. 

At the present day, 12th of January 2013, I am happy to say I'm doing well. Studying at Uni, learning to drive. I am no longer completely confined to a wheelchair. Even though everyday feels like a struggle, I am happy again.

I figure the best way to give thanks to those who got me through the worst time of my life is to live, as well as do everything in my power to raise awareness of these very real and debilitating conditions. These illnesses not only affect adults, but children too. M.E. currently affects over 250,000 people in the UK alone, Dilated Cardiomyopathy affects around 125,000. 

This is why I've told you my story. I know I wont be able to change the world, but I hope to make the world a little easier for someone heading down a similar path to me. You never know who might be next. 

Step Two - Fundraising. 

As well as spreading awareness, I wish to raise money for the organisations that saved my life, in more ways than you can imagine. In particular, The Association of Young People with M.E. (link below) and The Oxford Heart Centre in the John Radcliffe Hospital. I want to do the best I can to show people I am worthy of being here, there is a reason why I still walk this earth. Doctors and Nurses need to know what a wonderful thing it is that they devote their lives to, as there really is no greater gift than life. So, please help. In any way you can. To start, it would be incredible if you could share this blog!

Over the next few months I shall be organising fundraising events. If anyone has any ideas, please let me know! If you wish to be involved in what I'm doing here, I would be so grateful. Just let me know via email or on here. 

If you wish to find out more about my conditions, there are some links below that should help to explain!

Most of all, thanks for taking the time out of your lives to read this. It honestly does mean the world to me. 

Lindsey

x

Association of Young People With M.E. - www.ayme.org.uk

M.E. Association - www.measscoiation.org.uk

The Cardiomyopathy Association - www.cardiomyopathy.org

My Email - lashorter19@gmail.com