Monday 31 March 2014

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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  1. Thank you for being so open and honest and sharing how you do Joey. I give you tons of credit. You have written some awesome books that make me laugh. So nice that you can find that place of silliness. Laugher feeds the soul. You are so talented and have so much to offer. I admire you for your writing, for the kind person that you are and that you still push yourself to follow your dreams.

    I can relate on many levels. I am a sufferer of a chronic illness too and I don't care how often you have pain, you NEVER get used to it. We only adapt. Some better than others. What my illness has opened my eyes to is to never take anything for granted. This might be as good as it gets so look for that old zest for life you once had and make the most of it. Drowning in self-pity helps no one. Not that I don't have my moments. I sure do.

    Great great post! :-)

    1. Thanks Brenda :D The admiration goes both ways!

  2. Thanks for that great post! I haven't read your books yet only just stumbled across this blog. I feel with you and can empathize to a big degree, I'm a chronic pain sufferer and migraineuer here too. There are days when you so want to write or do something else for that matter and you just can't. Some days I just want a life. On others, you could write but that's when life gets in the way. You know that you need doing things around the house, groceries or go to doctor's appointments. Boy, the amount of those alone prevent me from having enough time on my hands. And never mind having a social life! I admire you how you keep pushing on and pushing thru it.That's the way to do it...with a tear in my eye...Hugs, Siggy Buckley