Tuesday, 30 April 2013

An amazing story!

Please read Sarah-Louise's story. You are welcome to re-post her story on your own Facebook, tweet the link to my blog, whatever; let's raise awareness of how severe M.E. can be.

If you would be so generous as to sponsor her too, you will find the link after her story. She's one of the most amazing people I know, so sponsoring her means a lot to me.

There is so much I want to say! Before I became ill I hadn't even heard of M.E and the first twelve years of my life were magical and very english. Then I had a vaccination against meningitis c and my health very quickly began to fall apart. At first it was just all kinds of aches and pains, dizziness, forgetfulness, nausea, the occasional fainting spell and a lot more tiredness but within two years I had a constant migraine and I struggled to drag my legs around because they were so heavy.

Soon I couldnt walk at all and I began to 'freefall' until I was blind and had no memories. I lost all of my words and my ability to understand other people speaking. I was so exhausted even when I woke first thing that it felt like I was trying to lift buildings to try and move.

I was housebound for a year and by the end of it I could stand for 30 seconds and manage a few painful steps, but then I relapsed again and became bedbound. I didnt sit up for four months, I barely moved and I couldnt talk. I had no sense of touch and no strength in my body. I suddenly perked up in April 2004 and could sit up and read a little, I was so excited. In July 2004 I woke up to find my whole body 'on fire'. So hot it felt like I was melting, so painful I wanted to scream and scream and scream. I honestly didnt think I could bear it for one minute. So far I have been on fire for eight and a half years and counting....

At first the pain, the heat and the pressure-which made my head feel like it was gripped in a vice- was so intense that I couldnt move or speak again. For six and a half years I was silent and still, simply enduring, my hearing was so sensitive that I had to wear headphones all the time. My parenst added another door to my room and triple glazed the window. every noise was still excruciating. I had blackout blinds because the light made me physically sick. I released a strange chemical that smelt acidic and clung in clumps to my hair, pooling in white/brown patches on my skin.

I woke one day to find my hands curled in fists, rigid, paralysed and I couldnt open them.

Nothing seemed to change until 2010 when they opened enough for me to be able to use my 'claws' and I began to be able to do little things despite the fire. like read and write and go online.

I am still bedbound, although I had a little time when I could move around the house last year, and the fire has been particularly awful again this last year.

Im 25 years old and I so want to live. I could write booksworth on everything thats happened, but really all I need to say is, Invest in M.E are actually doing something to help people like me...and their are hundreds of thousands of us. We all fight the same dragon, we all want to beat it so we can be free.

And I cant even tell you how heroic my M.E friends are, what they go through and also how kind they are to other people! If you dont know them, you are missing out!

With them and the girls from my old schools, and other people Ive met along the way, I feel that I have a life rich in people. But I am a young, free spirit trapped in a body that will not work! Invest in m.e want to change that.

And as to losing the 50 lb, its something I really need to do, although I do not know who is going to keep mr.kipling in business without my help ;)

Amazing isn't it. Can you imagine being totally bedbound, unable to move, you can't cope with light, or sound, and your body is burning from head to toe - for years? 

I can't. I have M.E.. I've experienced what Sarah-Louise describes, but for me it was only a few months. I simply cannot comprehend enduring it for what must have seemed to be endless.

Sarah-Louise has suffered more than anyone should in one life time, yet all she wants to do is give! She's one of the most encouraging people I know. She's that little light blinking away at the end of the tunnel. So, please .. help her raise the money for IiME. It will make her so happy.


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