Friday 23 May 2014

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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