Louise's Story

 

I was born in Exeter in 1989. As a child, I was always very active. I had some form of club or extra-curricular activity on virtually every day of the week, whether that was swimming, dance, karate, drama... or something else entirely. I loved music and learnt to play a range of instruments, including the piano, clarinet and flute. My real passion was for the performing arts, and I did everything I could to get myself involved in various shows and musicals. My ambition was to become an actor or a musician, and I put as much time and energy into it as I could. I'm quite glad now that I can look back and honestly say that I made the most of my time and energy whilst I was at school - I was lucky to not be affected by ME at that time and have really fond memories of always being on the go.

 

I got tonsillitis in my late teens and that was the turning point. The infection and sore throat cleared up, however I was left with a daze of sheer exhaustion, feeling generally unwell and finding that things I'd been able to do easily before now left me feeling ill and in pain. However, it wasn't so bad that it affected my life too dramatically at the time and I carried on like normal - I knew that something wasn't quite right, but I'd had blood test after blood test and was always told that it was clear, therefore I was fine. I assumed it was just me adapting to new challenges and lifestyles and so for a very long time didn't mention it or draw attention to it- I wanted to be like everyone else so much and knew that there was nothing that anyone could do about it. It took what felt like forever for them to decide what the problem was and it took a trip to A&E and hospital admission to really highlight that I needed help. That's the nature of the illness - it's just what comes from being an illness that is so hard to work out.

 

I was determined to become a teacher and pushed very hard to complete my PGCE year. Unfortunately, in doing so I made myself very ill. I spent months mostly bed ridden, including a horrible long spell in hospital. I watched all of my friends getting their first teaching jobs and settling into their careers; they were celebrating the end of their first half term whilst I was lying in a darkened room in an unbelievable amount of pain and suffering, wondering if I was ever going to get better.

 

Eventually, after making very slow but steady baby steps, I was able to do things again. I decided to complete my NQT year and eventually got my first teaching job. Just like my PGCE, I started off really well and loved every moment of being a teacher. However, I couldn't sustain it. Once again I began to struggle. I completed my NQT year, but once again was on the brink of relapsing. It became very obvious that for as long as I had the ME, I wouldn't be able to manage mainstream teaching. 

 

Luckily now, things are looking a lot brighter. After some time taken to recover from my NQT year I got a new job - still in education, but a lot less pressurised and more manageable than classroom teaching. I love what I do and am now looking to become a Special Needs teacher for those children that are too ill to be in mainstream education. I still have ME, but with a lot of careful planning and management of my illness, I'm able to live a life that allows me to achieve the things that are most important to me and have some fun along the way!

The making of 'From ME to You, With Love'

Throughout the whole time that I've had ME, one of the most difficult parts has been dealing with attitudes towards the illness. There have been a lot of people who have just not understood what ME is about, or even believed that it's a real illness, which has been hard for someone who has always just wanted to be healthy and enjoying life like anyone else. Sadly, a lot of people with ME experience the same. Not just disbelief or a lack of understanding from friends and family, but also doctors, nurses, employers, colleagues and others that you would really hope to listen and be understanding. A lot of this isn't just down to ignorance though - there generally is a very negative picture of ME painted by the media and society, and this was something that I wanted to try and challenge.

 

In August 2013, I was catching up with a friend and we were chatting about what it's like to be met with that lack of understanding. I explained that sometimes, trying to deal with the stigma surrounding the illness can be worse than the physical symptoms themselves. The idea for the book was almost a bit of a lightbulb moment - I remember saying how good it would be to have a book that was different to a textbook; something where it had come from sufferers themselves sharing their experiences. That's when I had the idea to put something together.

 

I decided that it would be a lot more personal for people to write letters rather than just stories alone. Even very early on I knew that the idea of the book wasn't to point fingers or blame people, but more to educate and make people aware of what it is like to be a sufferer. However with letters it would be harder for people reading them to think 'that doesn't apply to me' if they had a letter addressed to them. I also knew that I wanted all of the profits to go to the charity Invest in ME - I'd been kept up to date with the 'Lets do it for ME!' campaign and thought it was brilliant how people so poorly seemed to be doing so many exciting things for an amazing cause. It all looked like a lot of fun!

 

I set up a Facebook group to let people know about what I was doing and encourage as many people with experience of ME as possible to get involved. As I had no idea what I was going to call the book, the group was called 'Letters for Louise' and that name stuck right the way through the whole process. I was very kindly invited by Jo Best to write something about it all for the 'Let's Do it for ME!' blog and that helped to spread the word. And I even started writing a few letters myself. I actually found it really helpful to get all my thoughts out on paper. A lot of them didn't even go into the book, but it was brilliant to just write it all down and make sense of things. I hoped that other people would find the same.

 

As time went on, letters started coming in. Slowly at first, but then there was a sudden rush around Christmas 2013 and that just kept going. It was amazing and very humbling that people were responding so well. The shape of the overall book started taking shape too, all influenced by what people were sending me. It was amazing. I was sent some letters thanking people who had been brilliant for all their help and support, and I realised that those sorts of letters were just as powerful as sharing negative experiences. People were writing poetry too - as the book grew, it got more and more exciting and now people from across the world were joining in. The Facebook group became a hub where people weren't just finding out about the book, but sharing their letters and supporting each other. It all become something really special and I'm so proud of everyone who was involved. Suddenly, it wasn't just about publishing a book - I'd made new friends and I wanted to give them something back.

 

It seemed a shame to put a deadline in place for the end of March 2014, but I wanted the launch of the book to coincide with ME Awareness Week in May, and for that I needed a good amount of time to proof-read and put the book together. After the deadline, I was frantically busy editing the whole thing, reading it over and over and over again, putting the letters in order, deciding that I wasn't happy with that order so changing it, deciding that the original order was better after all... you get the idea! I was also having lots of exciting discussions with Becky Rose, who designed the cover, as well as thinking of ways to promote the book once it had been launched. I was literally living, sleeping and breathing the book - admittedly there were a few points when I thought 'I've taken on too much', but it was the thought of everyone who had helped me with their amazing letters that kept me going. A friend also had a read through to help me proof-read - it reduced her to tears, at which point she said 'I don't think it matters if there are a few mistakes. It makes it more real!'

 

The book was finally published on May 3rd 2014, the start of ME Awareness Month. I screamed when it appeared through my letterbox - after all the months of letter writing and putting it together, finally, here it was. It felt so bizarre to be holding a book with my name on it, that I had published, but there's no way I would ever want to take credit for it. It's the efforts of everyone who contributed that deserve to be recognised.

 

As far as what comes next, there are a lot of exciting things that have happened and will be happening. The book instantly received very good reviews and the word started spreading. I couldn't believe how many copies were being sold! The best part so far has been giving money to Invest in ME and knowing that the result is going to make a huge difference to someone one day.

 

People have also asked me about a second book. I am positive that there will be one, but I'd like to get as much out of this one as I can first. I owe it to everyone who helped make it happen. I'd like to be able to raise at least £1000 for Invest in ME with this book... wouldn't that be amazing?!

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