I recently had some photos taken for the launch of The Choice. We did the shoot in a local hotel that serves the best afternoon tea! Because, of course a book about a world where sugar is illegal and baking is a crime, needs to have pictures featuring cake. Beautiful cakes. And scones. And sandwiches. Wait, where was I?
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If you broke your arm you would go to the hospital. They would reset it, put your arm in a cast and send you home to heal.
What if they didn’t? What if they told you there was nothing they could do, that you should go away and try not to use it too much? What would you do? Now swap the broken arm for a condition that leaves you in terrible pain, with fatigue so bad you can’t work, socialise, walk or even get out of bed? That’s what happens with a chronic illness. I’ve been ill with ME/CFS for 26 years, bed bound for 6 of those, housebound for 14. So my metaphorical arm has been broken for a very long time.
Writing is easy, right? Ok I'm not talking about writing a novel, anyone who's ever tried knows it isn't. What I'm talking about is the physical act of writing, of putting pen to paper.
Five year old kids can do it. Ninety-five year olds can do it. So what would you do if you suddenly couldn't write a word? Worse still you couldn't read either. That’s what happened to me. I was bed bound for six years with ME a.k.a. chronic fatigue syndrome. Don't be fooled by the name, it's not just feeling tired. I was too ill to do anything apart from lay in a darkened room, 24/7. I went from reading anything and everything to being too ill to focus on a page of writing. It just looked like black and white lines. I couldn't watch TV or listen to music either. It meant there were no distractions, no escape; just pain, fatigue and frustration. Of all three the frustration was the worst. I felt trapped in my body and the only escape I had was my imagination. ​
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I discovered National Novel Writing Month (NaNoWriMo) by accident .
If you haven’t heard of it, NaNoWriMo is an international programme that encourages participants to write 50,000 words in 30 days. That’s 1,667 words a day! |
I liked that it had a set start and end date. A trial I could go for, then give up if it went horribly wrong.
Best of all? I never needed to admit to anyone that while my stories had been growing inside my head so had my desire to become a "real" writer.
Not an ‘I only write I secret’ author but a real honest to goodness, ‘I have books in a book shop’ author.
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And so it began...
I ended up doing two first draft novels during my first NaNoWriMo - 107,000 words!
One was brand new and the other was my favourite of all the stories stored in my head. It’s a story I still adore and one I want to come back to, to revise and publish.
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But I got distracted
The act of physically committing my stories to paper is a joy I can only attempt to describe.
It’s like flying free but being able to touch down and share the amazing sights I’ve seen with the people I love.
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My novel
Seeing is Believing
It’s a FREE story delivered via email in 200 words a week.
You vote on what happens next, the decisions the characters make and where the story is heading.
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What's it about?
Jess is losing her sight and with it her identity. After a series of unsettling incidents she starts to question everything. How can she be who she always was, when she can no longer trust what's right in front of her?
I've never done anything like this before. I've no idea what's going to happen but that's part of the fun of being a reader and a writer. All I know is it's an adventure. I'd love you to be a part of it. You can sign up here and receive the first instalment today.
​My Lifeline and Yours...
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The truth is it's not easy. I do get down and really frustrated. It's normally triggered by hearing what other people are doing, comparing my life with theirs and wanting more. I have such BIG DREAMS and I want them NOW!!! Right now. Not in a year or two (or three, or four). It's very hard to be patient. I am not a patient person.
There are days I want to scream, to shout and maybe kick something if only I had the energy. Those days I just try to weather the storm, not try to be smiley-smiley, Pollyanna; but I hate feeling like that so I've found the best way for me to cope is...
Distraction. Distraction. Distraction.
Browsing Facebook or watching TV doesn't help me when I'm feeling down, it's like time and energy gets swallowed up with nothing to show for it. I need to have a project to concentrate on, something I can think about when I can't actually work on it. I can plan my novel out in my head, or workout what changes I need to make to my website for when I do have the time and energy.
How do I decide what to do?
Help someone else.
It really is one day at a time...
What one thing could you do today that would be fun and feel like an achievement? Focus on that, no matter how small it is. Concentrate on that and let tomorrow take care of itself.
How do you stay positive or cope with having limited energy? What one thing are you going to do today? Pop on over to Facebook and let me know...
I couldn't believe my luck when I heard Garth Nix was coming to Norwich. His book Sabriel means a lot to me. It was the first book I read after being too ill to read for four years with severe ME.
It was a horrific time, unable to avoid my illness and escape into a book, I was ill and miserable. I had to imagine my own stories in my head; but I missed reading so much.
Despite not being able to read I still bought books, what can I say I just love them so much, the feel, the smell. I was keeping them for when I could read again.
When I bought Sabriel I knew very little about it; but the cover was beautiful, white and gold, I couldn't resist opening it. I read the very first sentence, my brain struggling to take in the words, to understand the sentence. It did and it was fantastic. I was hooked.
I was too ill to read more than a sentence a day at first and it took me nearly two years to read it; but I loved it so much.
Sabriel brought me back to books and the joy of reading and for that I will be forever grateful to Garth. It was an honour to be able to tell him that tonight.
Image courtesy of Idea go / FreeDigitalPhotos.net | I watch a lot of TV. I mean a LOT of TV and I love every minute of it. It's the surrogate life of an ME sufferer and I've experienced the world vicariously through the lives of my favourite characters. I've been a vampire slayer, a witch and a CTU agent. If my TV skills transferred to the real world I'd be deadly! Having been ill for so long, I've finely tuned my imagination, especially while I was bed bound for six years. I love the escapism you get from watching TV, you can disappear into another world and sometimes that's the only way to get through the day. I'm a bit annoying to watch TV with because I always try to guess what's going to happen. I'm getting quite good at it too. In fact I quite like the idea of writing for TV, something sharp and edgy, drama with humour and action. I love US dramas and I think there's a gap for a British alternative. When I heard about a local TV script writing course, I decided to sign up. It's a lot of fun and has definitely opened up my eyes to other writing possibilities outside of my novel. Watch this space.... Or maybe watch your TV and look out for my name popping up under the Writer Credit at the end of the show. That would be amazing! |
It’s from a friend and she's telling you what a wonderful time she's having, and how she wishes you were there-- and you look at the card and impulsively decide, "I'll DO it!"
Then you look around and realise that going away isn’t a possibility, just going out is difficult and getting on a plane is impossible.
Your heart sinks as you wonder whether you'll ever be able to have a 'normal' life.
That’s the situation that faces so many who are house bound because of illness or disability, or who are stuck going in and out of hospital.
When you're in that situation, all you can do is hear about other people’s amazing adventures.
Up until now.
After being bed bound for six years with ME/CFS I came up with the idea of a Holiday From Home.
I found a way to enjoy the fun and relaxation of a holiday and now I’m sharing that with other people. My first creation of this sort was a full holiday experience without ever leaving my room, where I put pictures up, ate the traditional food and even paddled in a foot spa pretending it was the sea.
From there, I created magical experiences that others could share. Experiences where it doesn't matter where you are in the world or whether you can even leave your sofa or bed-- you'll be whisked away to a beautiful place that seems so real you'll actually believe you've been there.
Just because life has put limitations on you, doesn’t mean you can’t have fun and with my help and a pinch of imagination you can have a great holiday from home.
That's why I'm excited that in August I'm organising my latest virtual vacation and I wanted to invite you to join me. We're going to be setting off on a luxury yacht to enjoy our Ocean Adventure - you'll be swimming with dolphins, sipping cocktails, eating ice cream on the beach and exploring a deserted island on our own treasure hunt.
It's going to be fun and fabulous and you can be there too. Click here to see all the details...
It's exhausting, especially when I realised that the race is just with myself.
Do you ever feel like that? I realised that there's no one else putting this pressure on me. Just me.
Seems kind of stupid when I made the connection; but it was a bit of a shock.
I've been telling myself for a long time that I don't have enough time to do everything and I was both right and wrong about that. I can't do EVERYTHING but then nobody can, whether they are ill, well or somewhere in between.
Also time is not my problem - time I have a lot of, in fact time is the one thing I have an abundance of.
Energy is my issue. I don't have the energy to do all I want, I have to pace, rest and sleep, which seems like wasted time; but in truth it's what I need to do what I do and keep functioning. It means I can run Live in Love in Laugh in and organise all thefun parties and events. It means that I have the energy to put together our Ocean Adventure in August, (more details to come; but a sneak peak - we are going to be swimming with dolphins, going in a helicopter and enjoying a Hawaiian Luau).
I'm just greedy and want to do even more! I'm not sure I could ever have enough energy and if I did then I'd be complaining about not having enough time. Yes I know, some people are never happy! Do you know the feeling?
Today I realised that I have to slow down and accept that everything takes its time, that the pressure I put myself under to get where I want to go is a) making me tireder and therefore slowing me down and b) not allowing me to enjoy the process. I have plenty of time to achieve my dreams and to get the word out about Live in Love in Laugh in and it's high time I started being kinder to myself.
How about you? Are there areas in your life where you could be kinder, gentler with yourself? Are there things you could relax more about and trust that they will get done; you don't have to be your own task master?
Leave me a comment and let me know how you're going to make the most of your abundance of time.
Image courtesy of dan / FreeDigitalPhotos.net
Noticing the signs when you're becoming overwhelmed by your illness and what to do about it.
19/4/2013
We've all been there and I know that when I was really poorly, during my bedbound years it took less to get me to this stage. Life was a battle, from fighting my illness, to battling with doctors and the "system" in general, meant I was always on the defensive, just waiting for the next attack, the next thing I had to protect myself from.
It was exhausting and emotional and I was, I'll admit it, snappy. I'd bite people's heads off i.e. my family. I had absolutely no patience and at times I felt like people were either a) stupid or b) deliberately trying to wind me up; but a lot of the time I was too stressed out to realise when I was over-reacting or being snappy. Does this sound familiar? How do you handle stress? Do you recognise the signs?
For a long time, deep down, I thought I was just an aggressive, not very nice person who was difficult to live with. That was a hard thing to cope with - I felt really bad about myself. Who'd want to be around someone so awful?
As I've got a bit better and life at home has become less stressful I've realised that I'm not an awful person. I do still snap sometimes; but I've realised it's when I'm stressed and feeling overwhelmed, especially true if I'm going through a relapse or handling some other scary thing - letter/form/appointment.
I've also realised that I can do things about it and my snapping is just a warning sign that I need to help myself. I can make things better, or at least reduce my stress level and feelings of overwhelm. If I can do it, you can to.
Five tips to recognise you're overwhelmed
2. Are little things getting to you? Silly things like wanting to burst into tears if you knock over a drink. I've literally cried over spilled milk.
That's what I thought; but recently I've been discovering that being an introvert is completely different to being shy. Things are making sense after years of not understanding why I feel the need to have a lot of time on my own. Why I enjoy my hours at night when everyone else is asleep and I can get down to doing some writing. Why I'm happier curled up reading a book than at a party, and how I'd prefer to chat to one or two people, or a small group at most, rather than try and follow the conversation of larger groups.
If this sounds like you check out Leonie Dawson's blog post and Susan Cain's TED talk. They made me realise that all of those things are okay and instead of trying to force myself to be different I should embrace them more, view them as my Superpowers, the way my friend Leah Shapiro describes them.
What about you@ What do you feel makes you different? Makes you stand out, or feel you need to change or hide it?
A big thing for me is my ME, the limits that my energy levels impose on my life and the restrictions it brings, like still living at home, using a wheelchair to go shopping and having to sleep for a couple of hours in the afternoon. They're all things I've felt ashamed of; but now I'm looking at ways to see them as strengths, looking for something special that I can do or bring to the world as a result of them.
What about you? What can you do naturally, or are used to living with, that you could turn into a superpower?
It's hard to stop trying to conform, to accept that it's okay to be who and how I am, right now, in this moment, with no need to change. I've spent my whole life trying to fit in (and feeling like I was failing or faking it). The relief of letting that go, of just breathing and being is huge. Imagine just relaxing and not trying to be anything other than yourself. Feels good doesn't it? Feels like a weight's been lifted off your chest, right? Imagine feeling like that all the time. That's my mission, to let myself be me, all the time and enjoy it. Want to join me?
Image courtesy of Idea go / FreeDigitalPhotos.net
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:
Title: The Choice
Publisher: Orion
ISBN: 1409187748