Wandering Thoughts

September 24, 2012

The other thing that makes chronic illness hard…

Filed under: Reactive Arthritis — terence @ 12:24 pm

…it is very hard to trust research on the efficacy and side effects of medication. This situation is insane, and technically could be cured, but thanks to the chronic problems of political economy it probably won’t be. Depressing. All the more so when you’re trying to figure out what to take.

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September 22, 2012

At Sea

Filed under: Going Places,Staying Places,Surfing — terence @ 10:50 am

The term the TV presenters use here in Australia is cell. Thunder cell. Like an al-Qaeda cell. Clouds gone bad. Mingling together in hidden valleys. Gathering. Spilling down from the hills. Darkening. Growing. Gathering.

Jo and I have figured a way of going surfing. If I use the soft, floaty, blue, learner’s longboard, I can catch waves and ride them on my knees. It’s exercise (in the sea!) and it doesn’t hurt that much, physically. Although I hide from other surfers. Trying to find quiet lonely corners of beaches where no one will laugh at a broken guy riding a soft foam board, awkwardly, on his knees.

And so that’s what we were doing – surfing – three evenings ago while the thunder cell massed. First there were just clouds, and then ‘it was looking a little dark to the south’, and then there was a big black wall, creeping up the coast from somewhere near Moruya.

We caught our waves a little anxiously, watching its progress. The lick of the lightning; the thump of the thunder. We rode small lefts down a sandbar, peeling into a bay. Not big enough for anyone else to be surfing but folding fast little sections for us to skim across, and bent by the curve of the coast so that the ebbing nor’easter was offshore.

Arms of cloud reached out off the edge of the storm, trailing soft curves of rain, blurring the horizon behind. And through that haze, on the other side of the weather, the sun was starting to set, burning colour around the edge of the clouds.

Jo was counting the seconds between lightning strikes and the sound of thunder.

The cell had crept north, maybe over Broulee.

“Time to take a wave in?”
“Yeah, that lightning’s getting close.”
“And it will be dark soon.”

So we caught one last set. I paddled into my wave, just off the edge of the peak. Paddle. Then the motion changes. Then I pull myself to my knees and turn down the line. And as I turned the sunset flared. The half of the sky yet to be swallowed by the black of the clouds was melted, molten, and reflected in the glassy water that I sped over. The impossibly red sea also reflecting, for a moment, then a moment, then a moment, the dance of lightening across the sky. I skimmed along laughing, shouting. If I’ve ever seen anything more beautiful surfing, I can’t remember it.

After, we hobbled up the beach, got changed into towels, and drove north away from the rain.

Hurting

Filed under: Reactive Arthritis — terence @ 10:43 am

Possibly my jandals were the culprit. Maybe I wore them too much, and they were too hard on my feet. Or perhaps inflammation returned because of my poor diet. Or perhaps the cause was exhaustion in those last few, too-busy, weeks in Honiara. Or maybe my arthritis just came back because that’s what it does.

Really, this time it had barely gone away. After the major relapse in 2008 it got better in 2009, was quite good in 2010, and then got a bit worse in 2011. Since 2008 I’ve never been well enough to surf properly, and sleep’s been hard. But I have been able to walk a fair bit, and day to day life had been ok.

But in June sometime the underside of my right foot started to hurt. Usually when I have a relapse it happens overnight, but this was slow, up and down, but with downs outweighing the ups. By the time I got to Wellington in the end of June I was too sore to surf. And a few weeks later struggling to walk. My hip, shoulder and back have joined in now. My back gets me when I sit. My hip when I lie. And my foot when I walk. And with the pain comes fatigue and inertia. And I’m worrying about my heart. I’m worn out. And sick of being sick.

I’m lucky too: helped by my wife and parents, and money. And being a PhD student is easier than if I were someone who made a living from physical labour. Lucky and tired.

For complicated reasons I can’t take methotrexate right now. But I need to get my inflammation under control (along with anything else I can’t risk any more damage to my heart). I probably won’t be able to get on TNF inhibitors unless I’ve been taking methotrexate (and I don’t know if you can travel when taking these anyhow). So my plan is a few months on steroids. Which don’t work that well but will help. The trouble is, it looks like I now have to wait, several months possibly, until I can see a rheumatologist to get steroids prescribed.

If I’ve learnt anything from all this it’s simply that actual illness is only a small part of being ill. The real story is you, and the intersection between you, disease, uncertainty, your friends and family, the country you live in, what you hope to do, and what you’ re happy doing without.

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