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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