#MilesForRefugees

Joey is wheelchair walking the English Channel for British Red Cross #MilesForRefugees in June!

For those wishing to sponsor her, the link is here!

Joey has been wheelchair walking around her local park three times a week since the beginning of the year, and when she saw this event, she knew she had to take part. She will be completing fourteen wheelchair walks over the month of June, all of which will make up the 22 miles of the English Channel.

For updates follow her on Twitter or Instagram.

Spoonie Writer: How Much Is Too Much?

SPOONIE WRITER: HOW MUCH IS TOO MUCH?

In my last Spoonie Writer piece (found here) I greeted everyone with the new year and listed my goals writing wise for 2018. Since then I've realised that I've never really talked about pacing yourself when it comes to both goals and the work load. Oh I've talked about saying no (found here) and I'm talked in other pieces about juggling the workload itself (here, here, and here). But if you're, like me, a spoonie who's also a writer, then you have to be thinking: when do I say enough is enough and realise I can't do that much? It's one thing to be realistic, but completely another to know when it's time to pull back and rethink matters.

As I've talked about before many many times, I'm a very organised person, and in being that organised I'm able to get things on track. I'm also someone who couldn't work a normal 9 to 5 job because there are days, like the remainder of 2017 after Christmas, when I'm just not well enough to get much or anything done. I've been chronically ill for over a decade now, coming up to almost two and one thing I have learned is that I have completely different limits than someone who's not chronically ill. I've also learned that I expect a lot from myself and that sometimes I go too far Sometimes I set the bar a little too high and then struggle to achieve my goals.

I'm not talking about not managing it, I'm talking about not being able to manage it. As in, even with all the time in the world, it's just not going to happen. It's taken me a long time to be okay with the limits my physical and mental health place on me, my writing career and the time I spend doing other things. I know it's a grieving process and I know that it effects everyone differently. For me, it was about both letting go of my childhood dreams, and making new ones, and also adjusting to being on a downward spiral health wise. Oh I don't mean that I don't have good days and bad, I very much do, but in the grand scheme of things, I'm not likely to ever get completely better. Not with any of my conditions, they are lifelong and chronic. That's just how it works.

So where do you draw the line? Where do you, as someone who wants to write and wants to be published and wants to proudly bear the title: author. How do you know when you're pushing yourself to unreachable limits? I'm a big believer in not setting yourself up to fail, but I'm also someone who likes to push the boundaries just a little. Either to check they're still there and solid, and also to see if I can find a way around them. I've been doing that my whole life and I don't plan to stop now. So the answer, for me at least, is not to lower my expectations completely, but to manage them along with my conditions. A good friend once told me that it takes a long as it takes. I wrote about it once, (found here) and it's something that has stuck with me throughout my writing path.

I'm not going to advocate for you to push yourself to breaking point and then spend days, if not weeks, sick and flaring. That's not what I'm saying. But I am going to say that as you adjust to life as a spoonie, as someone who's chronically ill, if there is an adjustment period that is, you need to learn what you can and can't do. There's a lot of talk of pacing in my circle of doctors and such, and there is merit with that. If you know what your body can handle, then you can adjust and work with it rather than against it. That said, if you're like me, you're going to want to push those boundaries every so often just to check. There's nothing wrong with that, you just need to be prepared for them to smack you in the face and send you to flare central.

You are the only one who knows your body the best. You'll hear from doctors and friends, relatives and other medical personnel. You'll get advice from them and sometimes from strangers, well-meaning or otherwise. But at the end of it all, you are the only one who knows how you're feeling and therefore you're the best judge of what you can and can't manage. When setting goals, when deciding to write or not, just remember to listen to your body and listen to those warning signs and work with them. It's so much easier for me to be as productive as I am now that I listen to what my body is saying, and I plot out the time I can spend writing. Generally I work half days. My doctor is happy with that and feels that it's better for me to do that small half day than push through a full day and then spend four of them recovering.

So to answer the question: How much is too much? Only you know the answer. I know for myself, but I'm me and you're you. Work with your limits and if you wanna check the boundary every so often, there's nothing wrong with that.

Let me know in the comments below how you can tell when you've pushed too far and how you cope with it? I'd love to hear from you all!

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Final #JoWriMoGo Tally For September 2017

The final tally for #JoWriMoGo in September is in: 24 chapters, 103 pages and 60,470 words written!!

October will be a low month because of Darker, but really pleased with this month's total!

The Trials Of An Indie Author: When You Want To Give Up

WHEN YOU WANT TO GIVE UP

This is something I've been meaning to talk about for a long while. It's been on my to-do list for writing advice for months and I've always picked something else to write about. But today, having had a bad few weeks, it seem prudent to cover a topic that I'm sure crosses a lot of writer's minds, and not just mine. It's something that isn't talked about much, probably because it's seen as attention seeking or worse, admitting failure, but it's something that I'm going to cover today. And that is that there will be days, weeks, even months, when you look at what you're doing and ask yourself if it's time to throw in the towel.

I have been writing since I was nineteen years old...scratch that I have been writing as a career since I was nineteen years old. I was first published at twenty-three and then my career really kicked off when I was twenty-nine. I'm now thirty-five. I have been published for almost twelve years and I have been writing as a career for almost sixteen. Along the way I've had moments of doubts, of course I have, and there have been times in those sixteen years when I have not written. The majority of my time at university I didn't write, despite having books out and published. I didn't write because my focus was on getting the books I had written out there in the world. I also found it hard to juggle writing and being a student when so much of one took too much energy from me to manage the other. It was only in my final two years at university that I was able to both write and study and even then some days it was a big struggle.

But one thing that has always remained true is that writing itself is an escape, it's fun, it's something I look forward to, something I find pleasure in doing. When everything else has gone wrong, I can always find myself in my work. I know how lucky I am to be able to have a job that always makes me smile and allows me to do what I love and get paid for it. The writing part is never a chore and never something I dread. But yet there are times when I feel like throwing in the towel. When I feel like all of this work is too much for me, all of the ups and downs of being an indie author are out of my reach and that I am sinking in a pool and no one can see me.

My hopes and dreams as an author are simple: Write books and stories that I have to tell. I don't look for celebrity status and I don't yearn to be the next J K Rowling, and maybe that's where I get lost along the way, but I know one thing for certain. I have to tell these stories. No one else will, no one else can. They are my stories and I need to tell them. And yet there are still days when I find myself looking at the open document and thinking: "Can I really do this again? Can I really finish another book? And publish it and do all of that that goes with publishing it?" The majority of the time, the answer is a resounding yes, but yet there are days when that small voice says to me: No, you can't.

As someone who has multiple conditions that inhibit my life, as someone who also has mental health issues, I can't tell you how hard it is sometimes to remind myself that I am doing something I love. That I am doing something I want to do and that I am doing it to the best of my ability. And sometimes it's not good enough. Sometimes it doesn't get me massive amounts of sales and it doesn't get me to the goals I have set myself, but the thing I have to remind myself is - it takes as long as it takes. I may not be a best seller, but I am further along than I was a year ago. I have written sixteen books with another two underway, and I will soon have eleven of those books published, out and on people's bookshelves. I may never be a big name, but I am doing something I love, and I am doing it well.

In the indie world, it's a well known fact that the market is saturated with books. It's one part of being indie is knowing that anyone can publish a book, whether it does any good is down to so many factors that sometimes my head spins. Getting your voice heard over the crowd of people all saying the same thing is no easy task and it's not one I've accomplished that well, but the point I'm trying to make is, that you have to keep going. Even on the days when it feels like all you do are the wrong things, and the mistakes you make are ones that have you still, years later, trying to undo, you have to keep going. You have to pick yourself up, dust yourself off, grab your megaphone and keep doing what you're doing, keep going along that path. It's hard. It's not easy by any defintion of the word and yeah, it sucks at times. But if you don't keep going, if you do throw in the towel and let your hard work fall by the wayside. You stop.

You stop having a job where you get up in the more just to create. You stop being the person who wrote this book and that book. You stop being the author that you so wanted to be. You stop creating. And you let the gremlin win. I don't want to be in a world where I don't wake up every morning and think about what my characters are going to be put through today. I don't want to stop. I don't want to stop being the author I am. Yes, it's hard and yes there are days when I am so ready to throw in the towel. There are weeks when I curse my choices and my job and everything along the way. But I also remember that I am an author. I am a writer. No matter what I choose to do with my day, I have stories to tell, stories that no one else can tell because they are mine and mine alone.

I am many things, I am disabled, I am bisexual, I am a wheelchair user and I do so many things, but I am also a writer. And when I want to give up, I remind myself of where I was, where I am, and where I am going to be. And that to get there, I have to keep going.

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Spoonie Writer: Idenitifying As A Spoonie Writer

Spoonie Writer: Identifying As A Spoonie Writer

I've thought long and hard about this piece. It's been something on my mind for a while and it's something that ties in with two of my other posts: Being A Disabled Writer (found here) and Why Is Representation Important? (found here) If you're aware of who I am, then you're probably also aware that I am disabled and I identify as a "spoonie" (an explanation can be found here as to what the spoon theory is). I firmly believe that there is nothing wrong with being disabled and letting people know about it and how that disability affects your life, however, there are other people who think that by being so outspoken about disability, I'm asking to be treated differently, or to get special treatment. I'd like to address both of those in turn and explain why I have decided that being open about my disability is the course for me.

When I tell people that I am a disabled writer, I am not asking to be treated any differently than any other writer, indie or otherwise. I welcome reviews, regardless of who they are from. I'm aiming to get my books on other people's e-readers and have their honest feedback and I'm not telling you I'm disabled to garner sympathy. In fact, sympathy is the last thing I want. I do what I do because it's something I love, and the fact that I'm disabled has little bearing on my choice of profession.

Then why do I bother to identify as disabled, to have it on my blog, to have it in my bio? The answer to that is simple. The world is filled with people who are all different, from skin colour to religion, to ethnicity to social class and everything in between. I know that when I was growing up, I identified with other writers who were like me. Female, white and writing about difficult young adult subjects. I didn't become disabled until I was in my late teens and it was only then that I realised that writing was the career path I wanted to be on. When I was first starting out, I wanted to look at other authors and see myself in their fiction. Even now as a fully grown adult, it's still nice to be able to relate to a character (or their creator) because we have something in common.

For me, that's relatively easy because I'm white, but for other people of different skin colours, it's harder to see people like them in all forms of media. Be that books, films, plays or TV shows. This goes back to the point I wrote about in the representation piece, which is linked above. As someone who has what would seem to be the "default" skin colour for the majority of literary and fictional characters, I can't imagine how it would feel to not see yourself in those forms. For the black girl who wants to read about other black girls kicking ass and taking names and saving themselves/the world and/or their friends. I have been lucky enough to have had that representation growing up and there lies the reason I am open about my disabilities.

Say you have one hundred female book characters. Now, you take out the white, able-bodied ones and you're left with maybe say twenty. Out of that twenty, you'll have about nineteen able-bodied people of colour. The one disabled character out of that one hundred characters represents one of the most under-represented people in fiction, and that's even before you factor in intersectionality. Now, this is just my own judgement, but it's backed up here, here and here. Those are the first three that came up when I searched Google for "disabled women in fiction".

What does this have to do with my own choice to identify publicly as both disabled and a writer? Simple. There are a number of young people, some teenagers, some younger, who may come across my name or my book and be able to see that people with disabilities, in my case, white women, are able to achieve their dreams. They are able to do wonderful things and that they don't need to be ashamed of who they are, or what their disabilities are or anything like that. I want the next generation of writer's to grow up knowing that they can be disabled and they can be proud of that fact. I want them to know that it's not a shameful thing to say "Hey, I'm a disabled writer". Until we start to show that there is nothing wrong, they will remain hidden from view and no one deserves that.

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Spoonie Writer: Learning To Say No

Spoonie Writer: Learning To Say No
 
When you're first diagnosed as having a chronic illness and you face the prospect of having  to live your life counting spoons, you quickly realise that there are going to be some things that you just can't do no matter how much you want to. When you add in a job like being an indie author into the mix, you'll find yourself running into problems as you try to achieve all the things you need to do. What do you do when your career needs you to do something, but your body is saying "nope!"?
 
The first thing to do is to face the fact that you will probably never go back to the person you were before you got sick, and realise that if you're going to accomplish things on both your good and bad days, you'll need to have some idea of just how far you can push yourself before it all comes back to bite you in the arse. For me, it was a big thing to accept that despite how much I wanted to take part in a blog tour or convention, I just couldn't do it all. I had to learn to listen to my body and I had to learn that I could say No.

If you're anything like me, you'll know that saying No to someone can feel like a bad thing. It can feel like saying no is telling that person or that opportunity that you never want their help again. I know in reality it isn't like that, but it's taken me a long time to get to this point. Before, saying no just wasn't something I felt comfortable doing. It felt like I was being rude, like I wasn't grateful for the opportunity being offered to me. But of course, it's not that at all, it's about knowing that if I do this thing or this promotion or push myself to write those chapters, in a few hours I will pay for it dearly.

My body will rebel and I will end up spending precious time either in bed, or worse, in hospital where I'm too unwell to do anything. The feeling of wasted time, for me at least, is worse than the feeling of saying no. So over the past few years, I have learnt that sometimes you just have to bite the bullet and tell someone that it was great to be thought of, but you just can't commit to that event. It's not a bad thing, it doesn't mean that you've let someone down and it's all part of being a spoonie.

There will be some people who won't see it that way, and honestly, those people are not worth the worry and anxiety. Those who understand will see that you need to have time to rest, to take some time away and that you are unable to commit to something that may make your condition worse, cause a flare or land you in the hospital. No one else can tell you how you feel, it's your body and your conditions and you will get to know them oh-so-well, and it's about learning to read the signs and know that although you are desperate to do a book tour or a book signing or a guest blog, you just can't at that moment in time. As someone more insightful than me said, the people who matter won't mind and those who mind...they don't matter!

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Spoonie Writer: Writing In Hospital

Spoonie Writer: Writing In Hospital

I have always said that one of the good things about being a writer in addition to having conditions that mean I spend time in the hospital is that I can pick it all up and take it with me. I have my book notes, I have a tablet (and before that, I had a laptop) and as long as I'm feeling well enough, I can write from anywhere. The same can't be said for many other professions. As someone who spends a lot of the time stuck in a bed attached to a variety of machines, it's a blessing on its own that I can write because it gives me something to do to fill the monotonous hours of plain old boredom.

I have become quite the expert at preparing my entertainment during hospital visits. Due to the severity of my conditions and the fact that things can change in a heartbeat, my carer and I have developed a good plan for what needs to be packed into my hospital bag and taken along with me whether I travel by car or ambulance. Here are my four tips for things a spoonie writer should try to take with them when they have to spend time in hospital.

#1 - HAVE TABLET, WILL WRITE
I know that when I first go into hospital, I'm usually not well enough to even think about writing, but having a tablet that is highly portable and loaded up with all my files and information means that when I finally do feel better, I can write bits and pieces here and there. It also means that I can play games when I'm bored and stay connected to the outside world with Facebook and Tumblr. I have a bag that is solely for my book stuff and has a special padded tablet section which means I can keep it all to hand, plus those over-the-bed tables are perfect for such a reason.

#2 - BOOKS, BOOKS AND MORE BOOKS
Before I had a Kindle, I would have to limit the number of books I could take with me, and my carer would be in charge of replenishing my supply during her daily visits. Now that I do have a Kindle, I can read as much as I like without the worry of not having something to turn to when I finish the last one. It's also a good way to take a break from all the stuff happening surrounding you and it gives you a chance to slip into another world where you don't feel awful.

#3 - CONNECTION WITH THE OUTSIDE WORLD
Other than the obvious reason, having a phone with a 3G connection is essential for when you're in hospital. You need to be able to call a friend when you're having a bad time, but you also need to keep up to date with everything else happening beyond the hospital perimeter. As I said in a previous piece, the world does not stop because you're sick. In terms of writing, it means that you're able to fact check pieces as well as update your Facebook page, and keep in touch with other writers and groups that you're a member of.

And finally, #4 - THE MUNDANE CAN BE DONE
If you're too sick to write, but not so sick that you just sleep all the time, you can get some other, more boring parts of writing done. You can do some research that's easy to dip in and out of. You can compose emails (though don't send them until you're sure they're not full of gobbledygook!) and you can think about plot lines that you've yet to use or that may be coming up in future chapters. All of the stuff that you wouldn't normally have time to do because you're too busy actually writing!

Of course, all of this is dependant on how sick you are, how long you're going to be in hospital and loads of other variables, but this is my essentials list. I also have a portable DVD player and some DVD box-sets that I have seen over and over but can still enjoy because when I'm too sick to concentrate it's nice to have something to fill the quietness without needing me to engage my brain too much. If you have any of your own tips, add them to the comments :D

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Spoonie Writer: Writing Whilst Sick

Spoonie Writer: Writing Whilst Sick
 
The term "spoonie" was first coined by Christine Miserandino when she wrote The Spoon Theory. It's a term used by many people who have chronic illness to describe what life is like for people like us. I embrace the term as it's a great way to explain the way I live my life whilst being sick. I am, by definition, a spoonie writer.

In recent pieces on my blog, I have written about what it's like to be a writer and be chronically ill (found here, here, & here). I have never really talked about what it's like to have to write whilst being sick. I've talked about writing whilst having chronic pain or chronic fatigue (found here) but I haven't yet touched on what it's like to be a writer, chronically ill as well as "normal" sick and still having to write.

Right now, I am having a few issues with my chronic illnesses that mean that I'm not having a good time health-wise. I'm having to use my nebuliser to keep my breathing under control, pain meds to keep the pain monster at bay and have just started with a different kind of CPAP machine to help with both the fatigue from sleep apnoea as well as the general fatigue from the M.E. To make things all the more hilarious my body seems to have decided that now would be the best time ever to have a cold/chest infection...again! It's a dance I am very familiar with and one that many people with chronic illnesses will be aware of.

However, the world does not stop just because I'm feeling crap. There are still emails to write, blog pieces to compose and books to start, plan and finish. I can take a few days off, but knowing my body, it wouldn't just be a few days, but more like a couple of weeks. So, if I want to get my books finished and all of that jazz, I have to adapt and write even though I feel bloody dreadful! I don't tell you this to garner sympathy or to win awards (though I did win Gold at the Sick Olympics!) but to show people who may not have seen this side of me, or any chronically ill person before.

I had a friend ask me recently when she was feeling particularly crap, with a cold and chest issues of her own, how I managed to be social even though I sounded, and was feeling pretty bad. My response was simply that if I stopped talking to people when I didn't feel well, then I'd never talk to anyone! There does come a point though when you can't just barrel through it all and I'll touch on that in another piece, but suffice to say, when those times happen, you literally have no other choice.

As a spoonie writer I have had to learn when my body has had enough, when it can literally do no more and is holding up the white flag in defeat. One thing many spoonies are told by doctors and nurses, physios and psychologists is that we MUST pace ourselves. They say that there is no point in spending all your spoons on one day because you feel kinda okay and then spending the next few days stuck in bed with a deficit of spoons because you overdid it. As someone who has been battling chronic illness for all of her adult life, I can say that it's true. Once again I utter the words, it's a balancing act.

On any given day I can wake up and not know how many spoons I'll have. I can start with a good number and then do the wrong thing, eat something that doesn't work for me or push myself a little too far in my wheelchair and BAM! My spoons are into the minus and I need to stop and rest. I can also start the day with so few spoons I don't know how I'm going to get anything done, and then be surprised by how rested I feel after a nap - though that rarely happens. It's hard to hold down any kind of job when you don't know from one day to next - hell, even one hour to the next - how you're going to feel. It's one of the reasons that being a writer has worked so well for me. I can work when I feel well enough to, and I can take time off when I don't feel well enough.

Hang on, I hear you cry, didn't you just say that you have to keep going even though you feel awful? Yes, I did and I wasn't lying. Sometimes there are things that can't be put off. Either a blog post or a book signing or a promotion or a deadline and no matter how understanding people are, you can't just pull out. It's times like those that you do have to weigh up the options and decide if the payback is worth the risk. The majority of the time it isn't, but sometimes you have to do it anyway, just as you would if you were a healthy person who had a cold or infection. The world does not stop or even slow down if you're sick and when you're sick all the time it seems to speed up slightly.

So yes, it's a balancing act and writing whilst sick is something that's somewhat more manageable than other jobs, but still there are so many times when I sit at my desk and all I can think is "I feel crap, I wish I could go to bed!" but deadlines and commitments mean that it's not possible. Your mileage may, of course, vary.

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