Managing lupus expectations - fine tuning your verbiage

When my mom and dad were visiting at the end of last summer, Bernadette was just beginning to show signs of giving up her afternoon nap. She was definitely not sleeping a full two hours every day, and on some days, it was a crap shoot whether she'd make it in her room even half an hour. We eventually found a happy medium, and you can read about that here, but you know how it goes. When you're transitioning with a little one, it takes some time. And usually a few tears.

As is usually the case when grandparents are in town, they take over the role of afternoon babysitter so that I can still get my nap, and they can spend as much time as possible with Deirdre and Bernadette. Our daily routine went something like this: Bernadette and I would head upstairs for nap time, and Papa and Deirdre would remain downstairs, playing quietly. (If I remember correctly, they actually feigned napping preparations, as if they were setting up the couch and chair so that they could "nap", too.) And then I would go to sleep, and whatever happened, happened. If Papa didn't hear from Bernie for an hour or two, it means she slept. If after 20 minutes she started fussing and crying, it meant it was pretty much a no-nap day. I wasn't going to ask my dad to try and negotiate with a non-napping two year old, so his instructions were to bring her down, to avoid an all out temper tantrum.  And it worked just fine.  Bernadette wasn't an absolute terror when she didn't nap, and Dad was a real trooper.

Trouble was I never knew whether to tell him to hope for the best, or expect the worst when she went down. I mean, which is better? To think positively and hope that Bernie rests quietly for 30 - 60 minutes, or to assume that she'll throw an immediate fit and not nap at all?

I've tried expecting the best - and that can set you up for serious disappointment. But I've also tried assuming the worst - and that can be equally as devastating. With the latter, you're not even giving yourself (or Bernadette) a chance to succeed. So I say hope that she'll sleep, but plan for her to get up sooner than later. The old strategy of "hoping for the best, planning for the worst" seems to work the best.

I've found the same to be true of my days with lupus, too. Since I'm currently experiencing joint pain and swelling daily, every evening when I go to bed, I have a choice to make regarding the next morning: plan on symptom reprieve, or symptom activity?  I found that hoping for the best, planning for the worst strategy to be spot on.

Hoping for reprieve allows me the opportunity to detect even the slightest improvement the next morning. If I think positively, as in "Tomorrow, I might just see an improvement in my symptoms", I get good energy flowing, open up my mind to the idea of my symptoms subsiding, and allow myself to envision that a reprieve is coming. Even if it's not exactly tomorrow, thinking positively keeps my hope alive. At the same time, I've found it's important to plan for the opposite. Even if I'm hoping for the best, I need to manage my expectations so that I'm not left with a plateful of activities that I then have to cancel. The best thing that could happen? I clear my schedule of unnecessary to-do's, and when a surprise burst of energy comes mid-day, I celebrate the fact by fitting in a little something extra.

Positive thinking. Realistic planning. That's what's working for me today!


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