In relating the events of the last few months to my mom and dad, I caught myself saying, "You know, it's hard to explain, but lupus is just unfair." In his wisdom, my dad paused, and replied, "Well, maybe it's just that it's unpredictable."
Indeed, Dad, you're right. It's the unpredictability of lupus that's so confounding. The symptoms, the flares, the side-effects. You never know what you're going to get hit with or when. Nor do you know how long it's going to last. But I quickly reminded myself that I know this. I've known this for awhile, and I've actually learned how best to combat it. If lupus is going to be unpredictable, then I'm going to be as predictable as possible. I suppose that's why I nap for two hours every day, why I try to get to bed at the same time, why I limit the number of errands I do, and why I space out our travel, social activities, and my working gigs so that I don't overload myself. While I'll never claim to have lupus all figured out, I do try to stay one step ahead of her. If she's going to try and unleash her haphazardness on me, I'm going to hit her right back with order and method.
Sometimes, I feel like my life is a bit over-run with guidelines. But those guidelines make sure I don't unknowingly slip into old habits of running my body into the ground or skimping on rest. It's all too easy to push off a nap or stay up late. And if I do it once, it's a lot easier to do it again. Before you know it, I'm no longer resting when I need to, or taking it slow and easy as I should. It can be a slippery slope once the guidelines go out the window...and that usually doesn't turn out so well.
In fact, I was just explaining this to a new babysitter regarding the girls. As I was recounting the "rules of the afternoon" (snack only between 3-4pm, only milk or water to drink (no juice), and choice of snack being fruit, cheese, yogurt, or the like...no sweets), I found myself starting to apologize for all of the rules. But then I followed up by explaining what happened before the rules went into place while babysitters were on duty:
When there was no designated snack time, food was being consumed continuously throughout the afternoon - some snacks even creeping up toward 5:30 or 6pm, leaving the girls with full bellies at dinner time. Choice of beverage became a juice fest - with cups of cranberry and orange juice being doled out all afternoon long. And the sweets. Oh my. They were having cookies and candy to their delight. It was no one's fault except mine - since there were no guidelines to go by. It started out innocently with a cookie one day, and a cup of juice the next, I'm sure. But without any guidelines, one time became every time, and then the slippery slope began.
Today, the girls are fine with the guidelines. In fact, I find that kids like rules. It allows them to work within a certain framework with which they're familiar and comfortable. I think they like knowing what to expect, too. Of course, we're allowed to veer off the track now and again. Special days get special treats, and there are always exceptions.
Just like there are exceptions with lupus, too. A special late night here, or a busy morning of errand running there. But the way the way I see it - there's already such a fine line between one's disease activity being stable and unstable. If there are some simple stipulations that I can follow to help tip the scales in my favor, I'm all for it. The guidelines definitely help to keep me on the straight and narrow...and living well, day after day!
Be sure to stop back on Friday for a guest post by one of my favorite rheumatologists - Dr. Donald Thomas, author of The Lupus Encyclopedia, due out later this year. In Friday's post, he'll cover the patient do's and don't's during a doctor's appointment. A post that's sure to be helpful to all of us!