Enbrel update

“Don’t you get bored?”, asked a taxi driver recently. He couldn’t see that having multiple hospital appointments every week, combined with aggressive rheumatoid arthritis that isn’t yet stable, makes working difficult. These days it’s four times a week, but at the most it’s been about seven visits every week. Once I feel confident enough to self-inject, that should change. I can’t wait to get back to work but need to a) get the RA stable first and b) work out exactly what type of job I’d do, as working four days a week may be more realistic than full-time.

After six Etanercept (Enbrel) injections, there hasn’t been a dramatic improvement in my joint pain or swelling. Perhaps I wasn’t helping the situation by enthusiastically playing the ukulele every day, including during a 2 hour class on Monday!! When my specialist nurse pointed out that my right wrist (the one I use for strumming) was looking more swollen than the left one, when it is normally the other way round, I realised it’s time to ease off the practice a little bit. Playing California Dreamin’ will have to wait a few days. And this way we’ll actually know if the drug is having any effect.

Away from the hospital and ukulele nights, I’ve been catching up with more friends who I haven’t seen for ages. It’s great to spend time with people who knew me before my life was dominated by chronic illness. We talked about anything and everything but crucially, not RA or Ehlers-Danlos Syndrome. I showed one of my friends round the Royal Academy’s ‘Sensing Spaces’ exhibition, a show that’s apparently about architecture. In reality, it gives adults and children alike a chance to climb up an incredible wooden ‘building’, and to marvel at scented wooden structures undulating from the ground like strands of hair emerging from follicles. At one point, we laid down inside a white honeycomb cocoon festooned with coloured straws, before adding our own straw creations! It was interesting to watch other people being creative too, using straws to write their names or designing a giant Catherine wheel firework shape. Best of all, it really got me thinking about how different environments influence my mood. A perfect reminder of why more time spent in art galleries and museums and less in hospitals is a good idea.

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