I've been feeling pretty unwell this week. The last four days I've taken painkillers. This is rare for me - I usually try to avoid them if I can as my stomach is not exactly a fan - but the last couple of days I even switched to stronger ones as I just couldn't cope with escalating joint pain. I've also been having problems with nausea, dizziness, rashes, joint swelling and of course good old fatigue has been kicking my butt. I'd put most of this down to the heat and sun exposure (middle of summer here in New Zealand) but I was getting worried, as I felt so low on spoons, despite cutting down on what I was doing. Last night I found myself sitting on the floor crying, thinking "am I really going to have to cut back even more? Can't I just have a life instead of counting spoons all the time?" Then I realised my face was sore, checked the mirror, and low and behold... Butterfly Rash.
I have a bit of a love-hate relationship with the butterfly rash. Obviously it's appearance is not really a good thing, because it means full blown lupus flare, but at the same time, it's reassuring in that once I see it, I know exactly why I feel crap and also, most importantly, that it will pass.
I was talking to my friend Kendra from ACuteAngle about spoons, flares and the fact that the symbol for lupus is a purple butterfly, and she made me this fantastic cartoon:
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| Lupus God Sacrifice |
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This sums up so amazingly well what a flare feels like. When you're flaring, all the spoons get sacrificed to appease the lupus god, and there's not a whole lot left for anything else. Lupus is eating up ALL my spoons at the moment. But he's got to get full eventually, right? RIGHT?
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| Fork Lupus |
If you'd like to check out more of Kendra's awesome cartoons, you can find them on the ACuteAngle Website or follow her on Facebook.
Thanks for reading,
Little Miss Autoimmune
It's summer in New Zealand, and for me summer means bad flares.
According to the stats, a lot of people end up on this blog after image searching butterfly rash, malar rash,
SLE rash or some other variant of the same thing. They end up on this post I wrote when first diagnosed with lupus, and I'm pretty sure a picture of me in face paint is not really what they're looking for.
I've been meaning for a while to post a proper picture of the butterfly rash I get, but it's been a little difficult to get a decent photo. Mainly because when it's bad enough to warrant a photo, I'm usually pretty unwell and don't have the energy to try very hard. The rest of the time, the rash doesn't look that different to sunburn or rosy colouring so there seems little point in capturing it on film. I've got an appointment with my dermatologist coming up, so when it came up badly on Saturday night I took this photo.
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| Butterfly/malar rash |
The lighting's in this picture isn't great but you can still sort of see the redness and swelling across my cheeks and the bridge of my nose. For me, it comes up very intensely at night but is usually not too bad during the day.
Little Miss Autoimmune
