‘Tis the season to be wussy


Woke up this morning and it was December. How did that happen?

Summer is upon us (and I am still getting used to Spring).

December is one of those months you either love or hate. I am not its biggest fan, I admit. It’s that combination of heat, bushfire season really kicking off, and the Season of Terrifying Shopping. Not to mention the horrors of the roads, filled with hot, stressed, cranky people all feeling the pressure to ‘relax’ and ‘celebrate’ the ‘happiest time of the year’. *

On the bright side, there is Christmas, which I always love when it comes around, even if I do slightly judge people who go turkey-beserkey and start putting up their decorations right about now. **

There is a house near us that always puts a giant inflatable Santa on their roof. This being the season of severe storms, he is always getting blown away, but they always manage to find and retrieve him. I live in fear of being accosted by a seven-foot-tall partially-deflated plastic elf/Saint hybrid when I’m popping down the local shops for sultanas and some milk. I’m just saying, Hallowe’en is far less terrifying.


December holds special terrors now I’m an admitted Spoonie.

The main horror is the shopping, of course. Although I’m making some gifts, I won’t be giving homemade pressies to the nieces and nephews: that would be unconscionably cruel. ‘I know you had your heart set on a new PlayStation game, and you only ever read eBooks, but here’s a nice embroidered bookmark. Now act grateful.’ No, very unfair. Even if I quite like the idea of embroidered bookmarks myself. ***

I’m desperate to get the shopping done as soon as possible to avoid the type of shopping mall scrums that I already know will result in panic attacks followed by up to six days of severe pain.

Sale time! Everything 50% off! All we want in return is … YOUR SOUL.

Luckily my brilliant mother is available to be my Shopping Buddy. I know without a shadow of a doubt that nothing bad can ever happen with her around. It’s true! And she will keep me sane and if I get a neural overload **** – a very real possibility – she will whisk me off for a cup of tea and some lovely Mum-chat, which is always very soothing.

The other risk is that of over-committing. Another very real threat.

I did that gig the other night, by the way. The one I was pretty worried about. And I was right to worry because a few nights earlier I had had some sort of mild food poisoning or similar, which gave me nasty gut cramps all night. The next day my gut was okay again – thanks to the wonders of Buscopan – but due to the lack of sleep I was a right mess, and I knew that I had to start thinking seriously ahead.

A non-Spoonie would feel every bit as bad, of course, after a night like that. But the difference is that a normal person would have one rough day, and perhaps feel pretty tired the next, but could be fairly confident that by the third day or so they’d be okay again.

I genuinely didn’t know if I would be. A bad night like that can so easily escalate into a flare. I had to decide whether to cancel the gig in advance, giving the band time to find a possible replacement, or whether to plunge on and take the risk that I might need to cancel on the night.

I took the risk. As it was, in spite of a pretty bad week of fatigue and joint pain, I lucked out and it was a really nice, fun night. But I could have done without all the stress and uncertainty.


The Jazz Republic doing the Jazz Republic thing (without me singing in that particular number, obviously).

Chronic illness is all about that stress and uncertainty. Every commitment is a risk. And it’s never much fun being the person who is always breaking their commitment at the last minute and letting people down. It’s also no fun getting partway into an evening of socialising and suddenly realising that it’s about to become an exhausting, unpleasant slog against that wall of pain and fatigue that just appeared on the horizon.

December is a tough month for that type of thing.

I’m promising myself that this month I’ll try to keep the commitments to a minimum. It’s sad, but I may be attempting to get back to work in January and I don’t want to scuttle my own health beforehand.

I do have one work event this week, which I’m looking forward to, but will also have no hesitation in cancelling if I need to. Work Christmas parties? Not for me, this year. Lots of medical appointments, unavoidable. Shopping of Terror, which I pray will soon be over. Christmas Day, which is usually fun no matter how I feel on the day.

I am a grumpy Scrooge about New Year’s Eve. Had too many awful nights of forced jollity to be willing to put up with it any more. ***** I’m accepting no gigs, no invitations, no events – all I want is a cup of tea and an early night!

Any energy I have for the rest of December can be used for seeing friends and family if possible, but I officially promise myself not to feel too bad about cancelling if it seems necessary. Even at the last minute. Every year I feel like I plunge into January exhausted, without a single spoon to my name, and this year it must be different, the stakes are too high.

It’s really hard to make the decision to dodge a commitment, especially given the uncertainty involved. I might wimp out of something then find that I actually feel fine at the time. But managing chronic pain means a lot of the time making the hard choices BEFORE you actually feel tired, or sick. It’s guesswork: am I likely to end up regretting this? Who knows? If the answer is ‘maybe’, that actually constitutes a ‘yes’ for the purposes of avoiding excess pain.

I hope any of my friends and family reading this will understand. ‘Tis the season to be cautious. If I wuss out of your Christmas party at the last minute I can promise it’s not about you. It’s not about me either.

It’s all about the pain.

* Bah.

** Because I’m a grumpy fat auntie, that’s why.

*** I haven’t made embroidered bookmarks.

**** Neural overload is a bad, bad thing that happens where suddenly all the sounds are too soundy and all the lights are too lighty, and all the floors are too floory, and the people too peoply, and all your clothes turn into sandpaper and the air conditioning is suddenly unbreatheable and your mind goes BLAAAAAAAH. And you have to go somewhere quiet and dark for a while until your brain remembers how to brain.

***** I’ve nothing against having a good time, but there’s such a thing as too much pressure. Shut up, Clock: nobody cares.


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