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.