Counting spoons

It was such a beautiful day. F. and I sat out on Castle Sands, watching the waves and soaking in the sun.

IMG_8414Can you spot what’s unusual about this picture? Having trouble? What you don’t see is that I’m in the middle of a flare up. F. helped me up that rock and then helped me down again. The point of the picture is to show how normal I look even during a flare up. Rheumatoid Arthritis is mostly an invisible disease.

I’m one of the lucky ones. After a year and a half of aggressive treatment I went into remission. No bone damage. But that doesn’t mean the RA has gone away. Seven years on and I still ache in the mornings. Sometimes I’m just too tired to do, well, anything. This last flare up is the worst I’ve had in a while — I say is, because it isn’t fully gone yet. I went in today for a follow-up appointment on the steroids they gave me a few weeks ago: the steroids worked for two weeks, and now the problem joints are hurting again. I might be cycling again and walking without a cane, but it still hurts when people shake my hand during the passing of the peace at church.

IMG_8399This flare up has reminded me what it’s like to have RA. Not that I had forgotten the fact, but I had been in remission long enough that I didn’t have to think twice before every activity, to plan my meals around what my hands and knees could handle. (A moment to sing praises: F. brought a bar stool for my kitchen! Now I don’t have to stand on achey feet, ankles, knees, and hips if I need to cook on bad days. Though I wish I could have seen him cycling across town while carrying it…) To refer to The Spoon Theory, I had been in remission long enough that I had become lazy about keeping track of my spoons.

What causes a flare up? No one knows. No one knows what causes RA to start with, let alone why it goes into remission or comes back. Personally, I know I’m affected by changes in weather and spring this year has been unusually unpredictable. I’m also affected by stress, something I am intimately familiar with since I am in the final months of my PhD.

I may not look sick, but I am. The way I see it, I can either give up or keep fighting. This is my life and I want it full to the brim with adventure, ambition, laughter, and love. So I will keep pressing on. RA has taught me to recognise the noble in the mundane, to realise that being faithful in my life here is as important as saving the world. I will dream, I will compromise, I will accomplish — all while counting spoons.

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3 thoughts on “Counting spoons

    • Chera says:

      Thanks! The image is from the entry for ‘March’ in Très Riches Heures, a Book of Hours commissioned by Jean duc de Berry in 1412-14 (the same man who commissioned the Roman de Mélusine). The castle is Chateau Lusignan and the dragon is Melusine! 🙂

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