I've been going through a reduction in my steroids over the past few weeks, thanks to my sadistic rheumatologist. OK, I know Dr K has is reasons, and at least theoretically, they're good reasons: to help me get control of my weight, and to stop the risk of steroids damaging my bones and other parts of my body.
I'm now down to the final point - what he says should be my highest level, but the lowest I have been at for many months: 5mg of prednisolone per day. This means I've gone from something resembling almost normal life, to being almost back where I was when I couldn't work at all.
I still have some energy to get things done in the morning, but I have a fair amount of joint pain with it, and I run out of oomph at about 10 am. (Given that I get up at 7am, that doesn't give me a very long day to achieve things in.) I just barely manage to keep going until about 10.30 when I have a coffee and sit and rest until lunchtime, when I eat and go for a nap. This nap often lasts until dinner time, unless I absolutely have to get up for something like hydrotherapy.
In terms of work for work, and work around the house, well I'm getting behinder and behinderer on where I need to be in getting things done. My "to do" list just keeps growing and growing, and I keep reorganising and rescheduling.
Eventually, what I am going to have to do is simply start eliminating things from the "to do" list - to decide what I can live without doing, as I've already put a lot of work into finding easier ways of doing the little bit I do.
Not everyone with lupus spends so much of their day in bed. I look at the incredible Brynn Hultquist's blog Lupus Interrupted, and am constantly awed by all that she manages to do. She's getting married (doing everything herself), is a mum of five, and does daycare. When I can't drag myself out of bed after my afternoon nap, I can't imagine how she does it. Which means that some lupies out there are getting on with their lives and getting things done.
Me, I'm getting next to nothing done. I'm just getting behinder and behinderer.