Journal of IiME Volume 7 Issue 1 (May 2013) Helping IiME – Sarah’s Story Invest in ME’s supporters have achieved an enormous amount over the years. One of the continually impressive ways of raising awareness of ME and of achieving fund raising to support biomedical research has involved use of our JustGiving pages. Continuing in the ethos of IiME and the methods of Let’s Do It for ME - to make progress and not build egos and to try to enjoy, as best one can, the events and ideas generated to support the charity – this nevertheless often masks some of the real tragedy being endured and the sacrifices people have had to make. So we have picked out just one story. Sarah-Louise Jordan is raising money for IiME and biomedical research. My Story 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 couldn’t 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 I 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 didn’t sit up for four months, I barely moved and I couldn’t 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 Invest in ME (Charity Nr. 1114035) 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 didn’t 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 couldn’t 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 parents 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 couldn’t 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. I am 25 years old and I so want to live. I could write books worth on everything that has happened, but really all I need to say is, Invest in M.E are actually doing something to help people like me...and there 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 can’t 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 don’t know them, you are missing out! With them and the girls from my old schools, and other people I’ve met along the way, I feel that I have a life rich in people. But I am a young, free www.investinme.org Page 22 of 36

23 Publizr Home

You need flash player to view this online publication