Ten years ago I was really poorly, I'd been bed bound for three years with ME/CFS and I was struggling. There was little information around for people who were so ill, half the medical profession didn't know you could get that ill with ME, the other half didn't believe it even existed. I was frustrated and isolated and I knew that I wanted to do something about it. I decided I'd put together a leaflet of tips for people with severe ME and gather up all the things that worked for me and others with the chronic illness.
It was a slow process; I couldn't physically read or write, I was just too ill. I had to dictate everything to my Mum, who was brilliant. Gradually we put it all together, over a couple of years. It expanded as we realised how much information we had to share, from a leaflet, to a small booklet, to realising it needed to become a whole book! It was incredible watching it come together and know that it was going to help people, make a difference.
Finally in 2004 it was printed by a charity I was working with and they sent it out for free, to all their severely affected members. I was so proud of it and delighted at the positive reaction it got. There had been a huge gap and I'd filled it with a practical guide to living with ME. I heard back from sufferers, from doctors and OTS, specialists who were using it with their patients. The book had gone further than I ever imagined it could!
Things changed, life moved on and I gradually got a bit better, leaving a lot of it behind as I explored new challenges. Now though, it feels like the right time to go back and update the book one last time. To add to it all the knowledge I've gained since the first publication and to bring it into the world again. Not just for people with ME/CFS; but for anyone that's living with a chronic illness, because I've met more people and realised that a lot of the themes and information are relevant to all kinds of illnesses.
It feels very strange and emotional to look back on it. To revisit what was my own personal hell. I'm on the other side and that helps; but it does bring all the horror back. It feels important to do this, not just for the new people I know it can help; but for me too. There's a lot that happened during that time that I suppressed, because I was just too weak to deal with it; but now feels the time to bring it out into the light, to see it for what it is and to release it once and for all.
Surviving Severe ME changed lives and I know that the new version Thriving not Surviving, LIVING life with chronic illness, is going to do even more.
Image courtesy of marin / FreeDigitalPhotos.net
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I've finished my first novel while enjoying copious amounts of chocolate and cake.