Claire Wade
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Surviving Severe ME - the revival!

4/3/2013

 
Surviving Severe ME - the revival!
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

Claire Wade is the winner of the Good Housekeeping Novel Competition and author of The Choice. She was bed bound for six years with severe ME, trapped in a body that wouldn't do what she wanted. She now writes about people who want to break free from the constraints of their lives, a subject she's deeply familiar with.
Stephanie link
6/3/2013 01:55:21 pm

I love reading posts like this as I am such a huge believer in our own power to heal and help others heal through our stories. Thank you for sharing your story.

Claire link
7/3/2013 03:41:19 am

Thanks Stephanie, over the past few years I've realised how much it helps for people to hear what you've been through and realise they aren't alone. I'm happy to share my story if it can help others.

Melanie Martin link
7/3/2013 04:13:15 am

So inspiring that you wrote this when you were at your lowest. You are really such a kind person who wants to help others all the time. Really, truly inspiring.

Claire link
7/3/2013 04:15:03 am

Thank you Melanie! I think it was because I was at my lowest that I was so motivated to do something, I felt so trapped I knew I didn't want anyone else to feel that way either. It was a really good focus and distraction.

Lisa Claudia Briggs link
7/3/2013 02:38:33 pm

Claire.. I love that even with such intense challenges you did so much good for so many others.. your big heart and divine guidance led you to something bigger. Cheers to the revival.. and to the growth and insights you've gathered along the way.. Love your new website too. Love and blessings, lisa

Claire link
8/3/2013 02:54:08 am

Lisa I think you're absolutely right, something bigger definitely drew me to the work. It felt the only way to make sense of it was to use it to do something positive.

So pleased you like the new site - I totally love it!

Jessica at ClickAClass.com link
8/3/2013 03:30:45 am

Thank you for telling your story so that others can learn. It's all too easy for me to forget to be thankful for what I'm able to do in the course of a normal day. I appreciate your perspective and look forward to watching you change the world!

Claire link
19/3/2013 03:37:24 am

Thanks Jessica for your comment, I really appreciate your support. I forget how different my life is and that's a good thing; but I'm pleased that I can use my experiences to help others.

eyenie link
8/3/2013 07:34:37 am

How lovely to read about your journey, and your creation that has gone on to help so many ME sufferers! And GOOD FOR YOU, three cheers really for expanding it and now writing to help chronic disease sufferers! I'm so happy to hear of your success and wish you loads more! YAY! Your message will impact so many lives! Thank you for sharing this! :)

Claire link
19/3/2013 03:40:51 am

Eyenie thank you so, so much. I really hope it will have that sort of impact. It feels good to know that even as one person you can make a big difference to many, many more.

Michelle link
11/3/2013 05:45:20 am

Claire, what a wonderful book, concept and site! I love what you're doing here and agree that your book could be so helpful for others who are house - and / or bed-bound -- regardless of condition. =)

Claire link
19/3/2013 03:42:27 am

Thanks Michelle, that's really what I'm hoping. When I first wrote it, it had a really narrow target audience; but as my experience has grown and I've met more people with different conditions, it's really opened my eyes. Fingers crossed!

Jacqueline Fairbrass link
11/3/2013 11:51:41 am

As always Claire, I'm inspired and humbled by your blog posts. I can only begin to imagine your life experiences. I love that you are not only lifting yourself, but taking your experiences out to uplift others.

Beautiful article, lovely!

You are living Choose Happy!
xox

Claire link
19/3/2013 03:43:33 am

Yes Jacqueline I am definitely choosing happy! It has lifted me up and I would feel very blessed to be able to enable others to do and feel the same!


Comments are closed.
    Claire Wade

    Claire Wade

    I'm an author, disability activist, winner of the Good Housekeeping First Novel Competition and The EABA for Fiction 2020 and founder of Authors with Disabilities and Chronic Illnesses (ADCI).


    The Choice is available from:

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    The Choice
    Publisher: Orion
    ISBN: 1409187748

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