Spoonie Writer: Taking Care Of You

SPOONIE WRITER: TAKING CARE OF YOU
 
I've been a spoonie for the majority of my life. I've been a writer since I was 19 and published almost 13 years now. One thing I have been very clear on is that you gotta take care of yourself. I've talked about this in other writing pieces, in vlogs, and all over the internet, but sometimes it's good to have a reminder of why you need to make sure you're taking care of you as well as your writing.

Now it's been a while since I did a piece like this, so I'm gonna quickly recap what a spoonie is: A spoonie is someone who is chronically ill and identifies with The Spoon Theory. How am I a spoonie? Well I have several chronic conditions including Fibromyalgia, M.E. and a rare form of asthma that leaves me reliant on oxygen and in a wheelchair. Now that parts over, lets move onto the main focus of this piece. Taking care of you.

In the writing world there is a lot of pressure to be working constantly. I see it, hell I even do it from time to time. There's also a big feeling that you should be pushing yourself to your limits to both write and build your platform. I am still considered a very small fish in the writing world and I doubt I will ever become a big one. Not because I don't want to be, but because there are certain things holding me back. Namely my health, or lack of it. I work hard, I write mostly every day and I make sure to stay on top of my own deadlines and everything that comes along with writing, but yet I still struggle sometimes.

A good example of this is last month I finished two books earlier than planned. I had pretty much a whole week to do nothing but various other pieces of admin. I could've started my next two projects and spent some of that time planning them, but I didn't, because I knew I'd been pushing hard and I needed to take a break. Now this applies whether you're a spoonie with physical conditions or mental health problems. I'm both and sometimes it's harder to take the time for myself when my anxiety of depression are acting up because there's a lot of stigma that surround them. People see the oxygen tubing and they give me a break for that, but when it comes to needing time because my depression is flaring and my anxiety is through the roof, it's harder. But that doesn't mean it shouldn't happen.

I know that there's a lot of talk about how people should be pushing past their barriers to make sure they achieve the maximum they can in any given time, and that's just not true. There are valid reasons for taking a break. Even if no one outside your own brain is saying that to you, it's still wrong. I struggle with taking time for myself. I don't want to let people down and I don't want to be the one who's always the reason for disappointment, but at some times, I do need to say no. I do need to tell people I need this time for me. It's not easy, not in the slightest and while yes, the majority of people should be understanding, there are some who won't be.

Here's the thing, writing is a creative pursuit. You're using all your imagination and time, and energy and all of that to create worlds from nothing. That has a toll on you. There should always be a chance for you to take some time for yourself, and if the people around you are saying different, then they need to take a step back. Again, it's not easy, I get that. I have friends who don't get that I need time for myself and I get how hard it is to say no to them, knowing that you're causing them upset and discomfort, but you need to take care of you. You are valid and no is a complete sentence.

So my advice is to take that time, take it slow and remember that you matter. You are important and alongside that, so are your needs. Now I'm gonna go and curl up with a book and have some much needed down time.


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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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Juggling Responsibilities & Staying On Track - The Creative Process

Juggling Responsibilities & Staying On Track

In my last blog post, found here, I talked about the dead zone and keeping motivated whilst not losing your spark during writing. Today I'm going to talk about something similar, which can be seen as a companion piece to that. 

One thing I learnt early on in my writing career, was that if I was going to get my work done and also have a life, I needed to stay on target. I also needed to be sure to maintain a good balance between working, and not working. I've spoken about that in numerous pieces, which can be found here, here, & here. My routine is pretty much dictated by how well I'm doing on any given day, along with a healthy balance of fun activities and not so fun responsibilities. For example, these could be the days which I put aside to do geocaching, or the days in the past that were all for my uni work, as well as the school run, which I do pretty much every week twice a day. These are all things that are important enough for me that I make time for them, although the school run is kinda mandatory! When you add in the disruption that come from living with several chronic conditions, you realise that sometimes it can be hard to stick to any proper schedule. While I'd love to say that I go geocaching twice a week, every week, sometimes it doesn't happen at all. The same goes for my writing, which while being my job, is also something I consider to be fun.

So, how do I juggle my time, along with my other responsibilities, to make sure that I stay on track with my writing? As you are all aware, I like to try and release one book a year, while also writing two at once. I know it's been a source of a lot of questions in the past as to why I don't just release all the written books as they are finished. I have my own reasons for that, but it mostly boils down to the fact that I can't guarantee when I will finish a work and therefore prefer to have books on standby, ready to go without the added pressure of a rigid deadline. It's one of the reasons I find so much of my writing time to be enjoyable, because I don't have the pressure of having to write a certain amount by an exact date, otherwise I'll have angry readers. It's not always something that works for everyone, but it does for me. I digress, anyway, I like to stay on target by planning a lot, and organising my work week around any other duties that may come up.

As a spoonie, I usually have at least one hospital appointment on the horizon, and on top of that I also have parenting duties that need to be met. I find the best way for me to organise my time is to do what started out as a weekly to-do list, became a fortnightly to-do list, and is now (for the time being at least), a monthly one. I set myself four chapters - two of each book - alone with a list of bonus items should I find myself having some spare time, and usually in that list there are four more chapters. Right now, I seem to be just about managing the basic four chapters, but my hope is that as time progresses and I recover from the recent bouts of ill health and surgery, I will be hitting the bonus list more and more. We'll see how things go.

Every time I manage something - because EVERYTHING goes on that list - I cross it off. It's a nice way for me to apply a little gentle pressure to myself, since I'm indie and don't have a deadline for the two novels I'm working on now, without it turning into too much pressure and causing me to work myself into a case of writer's block or worse, a health flare. I've been doing it this way for a good couple of years and in the years past when I was still a student, there wasn't much time for writing. However, having graduated last year with my BA Honours, I feel like I can devote more time to writing and other admin duties. That also leaves more time for fun things, which is always a good way to prevent becoming too burnt out by life.

Now, with health as fragile as mine, there are some weeks when no writing gets done. How do I keep myself on track when it feels like I'm blocked beyond belief or worse, in the dead zone that I spoke about last time? It's not as simple as just opening a word document and trying to force yourself to type. Sometimes it can be remedied by writing a blog post, or catching up with a friend on Skype or through email. Or even doing, as I said last time, something different with my characters to see if I can persuade them to actually do what I'm asking of them. The idea for me at least, is to keep the end goal in sight while not focusing on it too much. The best laid plans and all, and being somewhat flexible in the outcome means that I have something to work with when going down one path doesn't seem to provide much in the way of words.

So, my way of juggling responsibilities and staying on track with my writing is pretty simple. I write to-do lists, I allow myself some time to relax - even a whole week if needed - and I'm flexible with my planning. That's something I've learnt as a spoonie for the past fourteen years of my life, but it can be true for anyone. If you focus too much on one goal as the only acceptable outcome, you can burn yourself out, you can miss other paths that take you somewhere just as good, if not better, and you can find yourself getting very frustrated with your work. While I don't enjoy every aspect of being an indie author, I do like the writing part and I think for as long as that is true, it's going to be what I do with my life and my time. I hope the same can be said for you and your own work.

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Spoonie Writer: Worrying About The Future And Your Writing

Spoonie Writer: Worrying About The Future And Your Writing

As long as I've been a writer, I've been sick. Even before I was medically retired and writing became my job, even when I was writing as a teenager in school, I was still chronically ill. I hadn't embraced it the way I do now because this was before the wonders of the online chronic illness community. I have a lot of respect for my fellow spoonies and the ways in which they have helped me. However, as I was saying, I've always been sick as a writer. I have never known any other way to be a writer, I've always needed to move my schedule around and fit writing stuff inbetween the hospital stays, the stuck in bed days and the days when I just can't. I'm not saying that because I want you to look at me and say "Oh wow, she never got to live a different life", or to throw myself a pity party and be all "woe is me. I've always been sick". I'm telling you because my writing journey has been affected by the fact that I have, for as long as I can remember, been chronically ill.

When I was still in school, before the Fibromyalgia and M.E were in my life, I wrote a lot. I wrote poems, I wrote short stories and I did all that because I had a passion for the written word. I loved choosing my pen, my ink and paper and letting all the scenes in my head out into the world. To me, a big part of writing was the act of picking up a pen and actually, y'know, writing! However, things changed after school and my diagnoses. I found that writing hurt. It wasn't the good hurt either, the one where you had written and written and your hand was cramping in protest. I mean, it started like that but eventually the sentences got shorter and the bulk of what I could handwrite was interjected with breaks every few minutes because the pain was *that* bad. I eventually had to accept that I would no longer be able to handwrite my stories because I thought a lot faster than I could ever write. It hadn't always been like that, but it was one of those things that I had to let go of.

I adapted and started to type, which is what a lot of writers - spoonie or otherwise - do. It's so much easier in the world of the internet and all this technology to write with a keyboard. Having been typing for as long as I could form words, I am lucky enough to be able to touch type with some speed. It was a change that a lot of people would look at and say, "your point?" My point is not that I had to make this big change; after all, everything that was handwritten would eventually get typed into my computer anyway. My point is this: when you're chronically ill, you adapt your life around your conditions because if you don't adapt, you have to stop doing things you love.

About a year ago, I developed symptoms that were worrying to me, though not all that uncommon for people with my conditions. My legs would tingle and I'd be unable to bear weight on them. I was becoming more and more reliant on a wheelchair to get around. It was hard for me because I had always kept some level of mobility through my own terms, but now it was all different and I was reliant on being pushed, pushing myself, or using my electric wheelchair to get around. It wasn't how I wanted to be, but the fact that my conditions had gotten worse wasn't all that unexpected. I have been "lucky" in that for a couple of years prior to this new symptom, I had been having very few flares, relapses and new problems. It seemed that my conditions were just getting worse and once again, I adapted.

Which brings me to the point of this piece: I have started to show similar symptoms in my arms. The thought of losing the use of my arms and therefore my hands terrifies me because without the ability to type, I would become very silent. I use my keyboard to do so many things, writing, commenting, research and all of that. The only thing that I keep thinking is that I will find a way and adapt. I'll have to. That's just part of having a chronic illness and/or disability. You find a way to adapt. I know of some people that are bed bound, and they still are as active as they can be doing what they love. They have adapted because they *had* to. A friend of mine is bed bound and is still very active in writing. She has gotten the technology that will enable her to continue writing despite the fact that she doesn't always have use of her hands.

The joy of living in the age of technology means that even if we have to change how we get the words onto the paper, there are always ways of adapting your life so that you can continue to do the things you did before. The fact that things have worsened with my conditions doesn't mean that I have to give up what I love doing. There are voice recognition programs that will allow me to talk and the words will appear on the page. I've used them before and while they take some getting used to, they're not out of the realms of possibility. Just because I'm chronically ill, it doesn't mean that I'm any less able to do what I consider to be my career. I make the times when I'm well enough to work count, and the times when I'm not, I try not to beat myself up about it too much. After all, I didn't choose this for me, but I also can't change that it's happened. So, even though I'm able to type these words myself, it doesn't mean that I can't adapt and change the way I work in the future should the need arise. I can adapt, and so can you.

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Spoonie Writer: When You're Too Sick To Write

Spoonie Writer: When You're Too Sick To Write

One thing you quickly learn when you're a "spoonie" and chronically ill is that you have to choose how to spend your "spoons" wisely. Just as you have to learn how to say no (a piece about this is found here) and you have to learn how to write whilst actively having a flare or an attack (a piece about this is found here), you also have to learn that sometimes you're simply just too sick to do any writing - no matter how much you wish you could.

In my thirteen years of both being a writer and being chronically ill, I have learnt a few tricks for what can be done when you want to write, but are just too sick to do it. These things can be done alongside an ongoing project, or as a way to keep your creative juices flowing. They may not work for everyone, but they have, over the years, worked well for me.

#1 - IF TALKING IS POSSIBLE, TALK.
When I started going to college back in 2005, I was given a Dictaphone as part of my Disabled Student Allowance. The idea was that if I was too sick to attend a class, I could give it to someone and they could record all that was said. That would then give me the chance to go through the tape at a later date when I was more able to make notes. These days, there's an app for everything and most smart phones will have a note taking system that allows you to talk inside of type. I use this a lot when I'm stuck in bed to talk about an idea I have, or a writing piece I want to do. This piece was thought up during a recent overnight hospital trip and I was able to use my phone to record eveything I wanted to cover.

Now that I'm feeling able to sit at my computer, I can play it back and listen. Some of what is said is purely ideas that will go nowhere. Other pieces are bits I can use in my current works in progress as well as in this very writing piece. My advice to anyone who finds themselves unable to write on their phone or on a pad of paper, is to look into a free app (or use the phone's default if it has one) and play around with it until you get what you're looking for. It is also really useful for those late night thoughts. (I covered this idea in this piece here).

#2 - TAKE SOME TIME TO THINK
While the mind is not always reliable when it comes to recalling things at a later date, especially if you're overtired, in pain or struggling to breathe, it can be a useful tool when you want to plan something or write something that your conditions are preventing you from actually doing. Sometimes, slipping away from the reality of being sick can be a great blessing and a way for you to plot out the next chapter, or think about a blog piece you've been meaning to write. I find that when I am too sick to leave my bed, or stuck in hospital and too sick to write on my tablet, I can spend a good few hours just thinking about plot devices, blog pieces, character traits, anything to keep my mind off the pain or how crap I feel. You may not be able to look back upon a record of it later, but it can help you work out some problems with the plot or direction of your story that you possibly wouldn't have thought of, or might have spent time fighting with during an attack of writer's block instead. When you're sick, sometimes you need to have an escape and sometimes that escape can be just a mental visit to the set of your novel.

#3 - BRAINSTORM WITH A FRIEND
I am the kind of person who likes to plan and discuss plot lines with a few trusted friends. Sometimes I'll have an idea but nowhere to take it. Other times I'll have some semblance of a plot but no idea how to begin or flesh it out. It's times like these that I find that talking with my best friend about it, and discussing everything that could happen really fills the hours we spend at hospitals and with me stuck in bed. She's helped me craft some of my best ideas - and talked me out of some of my worst ones! So, if you're not up to writing, but you are able to talk, then this is a way to keep the flow of ideas going by discussing it with a friend, or another writer that you trust.

And finally #4 - NOT ALL WRITING IS WRITING
Although I may not be well enough at times to delve into my plot head-first and start to create, there are other aspects of writing that I am well enough to do. One of those is making notes about a new project, or planning a chapter or two. I can also do some light research or catch up on some emails. I can plan blog pieces and even write out an outline of what I want to do and where I want things to go. I can contact a few places for a review. Or I can read a book or two to give me some ideas that might work for my own novels. As discussed in the reading piece I did (found here), it's a great tool for any aspiring or published author. It allows you to see how others are doing things and work out how you would deal with the same situation.

So, those are my tips, and things I do when I'm too sick to actually sit at the keyboard and bang out a chapter or two. Everyone is different and every condition is different, so these might not all apply to you. In fact some of them may even just not work for your situation. So, if you have any of your own tips, please feel free to add them in the comments below!

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Spoonie Writer: Writing During Attacks

Spoonie Writer: Writing During Attacks

One thing you have to get used to when you're chronically ill, is that sometimes you'll need to do things, like write, when you really don't feel well. Such as when you're having a flare or an attack from one (or more) of your conditions. For instance, right now, I'm working on a chapter whilst sucking away on my nebuliser. It comes with the territory and it's not something that you ever really get used to.

A friend of mine asked me once how I managed to be so social when I wasn't well. Their reasoning was that when they felt crap, they didn't feel up to talking with or doing anything work related. My reply was simple - when you feel like crap all the time, you have no choice but to keep doing stuff, to keep talking to people, or you'd live in a hole and never do anything or see anyone. I'm not trying to be a martyr here, quite the opposite. I'm trying to say that when your "normal" state is one of ill health, you learn that the new normal is to keep ploughing through even though you may not feel up to it.

There are of course, times when that's just not possible, and I'll discuss the majority of that in another piece, but for now I'll just focus on the fact that life does not stop, the world does not stop, just because your pain level is through the roof and you only got two hours sleep last night. For some people, it is easier than for others and while I am not here to make judgement, nor do I suggest that you pass judgement on others either, sometimes you just have to keep going. Sometimes what may seem as really sick to an healthy person may just seem to you as a bit of an annoyance.

So, as a spoonie writer, I have learnt that in addition to making sure I take the right things along with me for hospital stays, I sometimes have to work through my sickness and ill health to make sure that I meet my own self set goals. As I've mentioned before, I set myself four chapters a fortnight and generally I meet that goal. Other times I'll go beyond it and sometimes I won't manage it at all. The fact of the matter is that I have been told by many health professionals in my years as a spoonie that pacing is a big thing for people who are chronically ill. Their argument is that when you have a good day, if you attempt to do nine things off of your constantly growing to-do list and push yourself, then you'll have a string of bad days where nothing gets done and the list grows longer. The answer, I'm told, is to pace yourself. Do only three or four of those things and then manage to do a little more the next day. The idea is that you don't overdo it and end up with more manageable and good days than the bad and bed-bound ones.

I have experimented with this over the years and have found that as long as I am not stuck in bed and completely unable to work on my computer (a piece about that will be coming soon), I can usually do some work towards my writing. Whether it's a paragraph to a chapter or a small blog piece, an email answered or a review request sent, all these things add up to be part of my livelihood and that allows me to do about the same every day, sometimes a little more when I'm feeling up to it and other times a little less. I have yet to find the exact balance, and that's after nearly thirteen years. I'm sure the words "balancing act" in a piece like this do not surprise you, but you'd be amazed how much of my work and life is just that. Finding the sweet spot takes time, but when I get there, I'll let you all know!

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An important update

Hey Guys!

So, this is a scheduled post that I wrote a while ago, but have only posted now because I wanted to be sure how things were going to go. As the majority of you are aware, I have several chronic conditions. I have never hidden this from any of my readers or other author friends, indie or otherwise. However, one of my conditions has gotten progressively worse and I am now on a new trial drug that is making it hard to keep up with my daily jobs. The trial will last sixteen weeks and I'm on week five right now. There are no guarantees that this will make my breathing easier, but it has showed promise in other patients with my lung issues.

I have sat my final exam for my degree in the past few days and am now able to concentrate solely on book work and a few other hobbies. I have written over the past few weeks a whole heap of blog posts that I will make sure post over the coming weeks. I don't know how long it will take for the side effects to subside, or if they will completely. All I plan to do now is take my time, grab each day as it comes and do what I can. No one can expect any more than that.

I'm writing this because I know that Facebook are limiting who sees my posts, and while this also gets posted to my Tumblr, Goodreads, Twitter and Google+ pages, I want you all to know that I am focusing on the best thing for me, which is to keep breathing so I can keep writing. I plan to do as much as I can to keep you guys in the loop in regards to my upcoming release, as well as let you know how I'm doing. However, I won't be doing as much as I was because the side effects are brutal. So, if you don't see me post on my Facebook or elsewhere, don't think I've disappeared, I'm just taking some time off that day.

As always, if you want to reach me, you can email bugbooks@virginmedia.com and I'll respond when I can! Thank you ALL for your support during this time and I promise that I will be back :D

Joey

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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Being A Disabled Writer - The Creative Process

Being a disabled writer

I don't really talk much about being disabled in regards to my writing. I have done some posts on having a chronic illness (found here and here) as well as having chronic pain (found here). It's not that I don't like to talk about it, just that I write a lot of pieces and don't want to be seen as going on about the fact that I am also disabled.

There is a lot of negativity surrounding disability in the media. Whether it's books, TV shows or films, usually the disabled person is either a minor character or they're the villain, turned bad when their life was destroyed because of an accident/illness that caused them to become disabled. There's a big need for disabled characters who are shown not just in a positive light, but in a general every day one. Disabled people exist and children and young people facing any kind of disability need to be able to find themselves in fiction. They also need to know that just because you're disabled, doesn't mean that you will rot away in a cupboard somewhere and never amount to anything. We need to remove the stigma of disability and show people that we are just as normal as everyone else. We just have additional needs.

I know that in the chronic illness community, there is a lot of talk about how you shouldn't let your condition "define" you, that you should overcome them and be who you are in spite of it. While that is true, there is also nothing wrong with identifying as disabled and not hiding it from people. As you all know, I have several chronic conditions and all of them effect my life, from the amount of sleep I get to the level of pain I am in, and while I do not think that I am my disease, I also see nothing wrong with saying that I am a disabled person; a writer, a student, an amateur musician, but also disabled.

In my uni courses I have done a lot of reading about what makes up a person's self identity. My last course had a whole section on it and the one I am doing right now does as well. I choose to see myself as disabled, but that doesn't mean that it's a bad thing. We should be removing the taboo from the word and we should be allowed to be proud of both what we've accomplished in life - as a student or a singer or a doctor or whatever - but also not be scared to add the words "I'm disabled" into any of that.

I have written a handful of disabled characters, some as main ones and others as minor characters. I have included disabilities that affect mobility as well as other conditions, such as blindness or mental illness. These are all things that affect everyday people and sometimes just looking at a person will not tell you that they are disabled. There is nothing wrong with not wanting to identify as having a disability, but the opposite it true as well. There are writer's in the Young Adult genre such as John Green, who have written disabled characters and written them well. However, for the number of people affected by a chronic illness or disability in the UK alone (over 11 million according to the Fair Treatment at Work survey in 2008), there are surprisingly few disabled characters in young adult or even adult fiction and those who are often have their disabilities hidden or erased. For example, as great as The Hunger Games books are, it's very easy to forget that Peeta has a prosthetic leg after the first book and it's not even mentioned in the movies.

So yes, I am both chronically ill and disabled. I'm not ashamed of it and while at times, I wish for some aspects of my life to be different (who doesn't?), I'm not going to deny it either. I am proud to say that along with being a published author, I am also living with a disability, there's nothing wrong with that.

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Writing In Pain: How Chronic Pain Affects My Work - The Creative Process

Writing In Pain: How Chronic Pain Affects My Work

It doesn't take a genius to work out that when you're in pain, it's going to have a knock on effect on everything you try to do. Usually when someone is in pain, it's a short term thing. They've broken a limb, or had an operation, or something else. The answer is to work when you can and wait until you're better to really push yourself back into the job. My problem is that I am always in pain and I will not simply "get better". So, I can't just wait around for never to arrive before I go back to writing. I have to find a way to work with my pain and my career, and it hasn't been easy.

As those of you who follow my blog and Facebook page will know, I am a chronic illness sufferer. Among other conditions, I also have M.E and Fibromyalgia. Both of these cause a myriad of symptoms, two of which are the focus of this piece. One in a big way - the chronic pain, and the other as more of a mention - the fatigue. I was diagnosed with both in 2001 and it is because of these conditions that I had the light bulb moment that told me I could actually be a writer. I had been retired from my working life on medical grounds and had been told that I would probably never work a traditional job again. After finally stabilising in regards to my health, I started my career as a writer. I haven't looked back since.

So, how does having two chronic pain conditions affect my work? Add to that the fatigue that comes from both M.E and Fibro and you have to wonder how that affects what I am able to do and when I'm able to do it. I have already written about how I juggle being chronically ill and being a writer (you can find it here), but when we take just one symptom that seems to have a lot of power over me, what do we see? Pain is hard to work through and even for someone like me, who has a high tolerance for pain, and is, in a way, used to feeling it daily, then you have to realise that with that comes the ability to work through the majority of it.

However, that's not to suggest that I am superwoman, I still have bad days when I can't even put myself into my wheelchair and I just stay still for fear of movement jarring a new pain. I still have days when I have the best ideas ever, but getting out of bed is impossible. So, on those days I am limited in what I can do. That doesn't mean I don't work, just that there are times when no matter how much the brain is willing, the body is far from able. However, I do have my tablet and a great writing app. I also have a number of adaptations round the house that allow for me to write in bed, or at my desk easily in my chair and I can even write whilst lying down flat to keep the pain happy.

That's what it's about really though, isn't it? I talk of gremlins called Neil and muses that zoom around the desk, but what we're talking about now is a monster. The Fibro monster who causes so much pain and cries with glee whenever I try to move because it means that it can always cause me more pain. It's about learning to factor in that monster's presence so that I can have some semblance of a life, a job, a career. The long and short of it is simple. Some days I win and a chapter or two is written and life is all okay. Other days, the monster wins and it sits with a smirk on its face as the pain chases away my ideas and ability to think straight. Some days it's a mix of both and on those days I am never sure if what I have done is an accomplishment or if I was foolish to have tried, because that monster wants to win and will always come back for more. It loves to get payback.

I learnt early on in both my writing career and my battle with M.E and Fibro that I had to pace myself. People diagnosed with some kind of chronic illness will be nodding their heads, we have to learn that even though we will have bad days and accomplish little or nothing at all, we will also have good days and the trick is to not fill your good days with so much stuff that you end up with a run of bad days as payback. The Fibro monster just loves to get payback in whatever form it can. Take today for example, it's past midnight and I have been fighting with the Fibro monster for the past week. Two nights I have seen the wee hours, and tonight may not be any different. It's a long battle and although I may occasionally declare victory, it is not long before the monster starts fighting anew.

When I have an idea for a piece, I try to write as much as I can. There are always the annoying times when I'm desperate to write, but am stuck in bed because that monster has shown its face and is taunting me with cramps and other various methods of pain. That's when having a tablet comes in, along with the other adaptations in my house that allow me to write from bed if need be. I know I say this a lot, but it's a point I need to hammer home more with this topic. It is a delicate balancing act of doing enough to satisfy my muse and desire to write, whilst not doing too much that would upset the monster within me. Some days I win and balance perfectly, other days I fall flat on my face and have to declare defeat, retreating to my bed to rest, because the pain monster brings its friend - fatigue.

Both of these work against me. If it's not the monster causing me to spend time I could be writing in agony, then it's the fatigue causing me to need to sleep, rest, or just do nothing too taxing for a little while. Sometimes they even tag team me and before I know it I've lost two days to a combination of sleep, pain meds and too much brain fog to construct any kind of sentence. It's frustrating and there are many choice phrases I would use to describe those days, but I won't. The point of this piece is to tell you that being a writer who is also a chronic pain sufferer has its impact on my work. Even when I don't want it to.

I identify as disabled, and call myself a disabled writer. Some people in the chronic illness community and the writing community see this as a flaw because they say that I should not define myself by my conditions, that I shouldn't "let" them define me. They have a point. I am not Fibromyalgia, just like I am not my lung condition. I am me, and I am many things other than disabled and a writer. However, by acknowledging that whilst being a writer, I am also disabled and a chronic pain patient, I'm saying it's not a weakness. I'm saying that it's who I am and I'll be damned if someone is going to make me feel bad about that. I'm not for one moment suggesting that others should identify the same way. Your self-image and self-identity are very personal things and no one should tell you how view yourself. I'm just saying that for me my self-identity is that I am a disabled writer who lives and works with the conditions that I have and I'm in no way ashamed of that. Your mileage may, of course, vary.

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