I've had a pretty mad few months. I applied for a job, got a job, started to flare, got my first ever lot of steroids to combat the flare, had my baby brother go into hospital and got the mother of all chest infections, which is causing me to (possibly) flare again. Only the first two on that list happened over a month ago; the rest has just been within the last four weeks.
It has been that mad.
The flare started simple enough, just the usual creeping up on me thing followed by some really awful days where I had to say no. Then the brother got sick. And went into ICU. Where there's fluorescent lights that are on all the time, causing the flare to kick it up a gear. And flip sake, it did! My malar rash hurt and looked awful... the worst it's ever been. It has never hurt before, no matter how obvious it is.
Quick trip to my wonder rheumatologist who took one look at me and gave me a steroid injection. Best thing ever! Four days later my rash had gone, I had no mouth ulcers and I was, wait for it, pain free. Yes, pain free! For real, no exaggeration.
Two weeks ago, I wake up during the night feeling a little warm. Right, ok, take off my usual extra blanket and try again. That morning I woke up with a fever and Strep throat. I don't care what anyone tells me about only kids getting it and it not being that bad, it caused my first ever lupus flare three years ago so of course I'm going to panic. That panic resulted in my first ever lupus related trip to an out of hours surgery to get loaded up on antibiotics. And it turned out I was too late as it had already moved down into my chest... Bring on second lot of antibiotics! These were the hard-core stuff, meaning I was keeping a tight hold on my anti-sickness tablets. I'd forgotten just how well those work.
Now I might be flaring. Or possibly still flaring as one opinion is that the steroids didn't work to start with. I find out in a few days what's happening with me, whether it's the result of the infection, or just that awful feeling after antibiotics. Whatever it is, it resulted in me being in my third week off work, something that hasn't gone unnoticed.
But what it has made me realise is the importance of counting spoons. Before all of this happened, I'd become lazy, taking them for granted even. I'd forgotten just how precious they are and how reliant I am on them. Today was the first day in nearly three weeks that I made it out of the house for something other than a trip to see a doctor. Yesterday I'd just about been able to have a shower before collapsing on the sofa for two hours. Tomorrow, I hope to make it to church but I'm aware of my limits. It'll also be the first Sunday I've been there since the brother went into hospital and I know I'll be inundated with the same questions as to how he's doing.
Counting spoons means deciding what's more important. It also means having to to say no in order to be able to shower the next day.
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