Finding flexibility in a lupus lifestyle. How far can you go?

"To push, or not to push, that is the question."

At least, that seems like it's the question. I've been feeling absolutely, positively fabulous lately. No swelling, no extra fatigue, and no pain. Not even a pesky stray digit that flares up when I don't eat quite right, or get enough sleep. Lupus has been as quiet as ever, and I'm completely thrilled about it!

In fact, I can even say that every few days, my afternoon naps don't seem quite as critical as they usually are. I still need one, that's for sure. But about twice a week, I a) don't feel fatigued until about 3:30pm, and b) I can get away with 90 minutes, instead of my regular 2 hours. I'm enjoying the flexibility - but I'm trying to figure how flexible I can actually be.

If you remember, this time last year marked the beginning of a flare - a long, nasty flare that had its ups and downs for almost eight months. It wasn't fun, and I have no intention of repeating that again.

But with the fall upon us, and Deirdre starting Kindergarten (eek!), we'll have a whole new routine in the Gorman household. Forget our leisurely 8-8:30am wake up calls. Now, we'll be getting up at 7am, to get Deirdre to school by 7:45am. She'll be in school until 3:10 pm most days, which will be an even bigger adjustment. We generally don't schedule ANYTHING between the hours of 2-4 pm (my sacred nap time), but now, we don't have a choice.

So the question is: can I push my nap everyday until 3:30pm in order to pick her up? Do we need to hire a babysitter after she comes home so I can nap? Will I actually have enough time to nap before she comes home, if Johnny and Bernadette pick her up?

These are the questions I've been considering, and I was having a tough time deciding what to do next. Johnny's on standby to do the pickup and help with Bernadette, but I really want to explore my options, if, in fact, I have some. Now that the Cellcept is working its magic, I don't want to assume that things have to stay the same.

So as I struggled with a plan of action, I considered how I would respond if a reader emailed me with this sort of question. And my answer would be something like this: Try it once. If it works, try it again. Just be sure to have a contingency plan in place for awhile, in the event that it doesn't work out so well. (It may work the first week you try it, but by week 2 or 3, the toll may start to become evident.) And don't get discouraged. Just because it doesn't work out completely, you may have discovered some other flexibility that you didn't know you had. And you can always try again in a few months.

So there. That's what I'm going to try. I'm not going to rearrange babysitting schedules yet, and I'm not going to commit to anything re: pickups. I'm going to run an experiment first, and see how it goes. I have a perfect opportunity for a mid-afternoon errand coming up, so I'll try it and will be sure to report back.

Whatever happens, I'm going to heed my own advice, advice that can be found in the Looking Within chapter of Despite Lupus. Here's the excerpt:


Imagine your life as one big theatrical performance (not too difficult, right?). You are, of course, the star of the show, and those close to you will be playing the requisite supporting roles. Now assign lupus a role in the production – that of stagehand. Lupus’ job is to be as inconspicuous as possible: to stay behind the scenes, disrupt nothing, and if movement is necessary, attempt to blend in with the scenery. You give this very special, important role to your disease, not because
you necessarily want it around, but because you know it’s not leaving anytime soon. Acknowledging that it’s a part of the play and giving it a job to handle will hopefully keep it busy and out of your way, allowing you to give your best all-time performance.

As you act out the scenes in your life, ask yourself the following: is what I’m about to do going to allow lupus to upstage me? Will my disease, who’s supposed to be waiting idly behind stage, have an opportunity to run across stage, leaping and bounding and causing a scene? For example, if you work extra late, or refuse to go to the doctor, will you be encouraging lupus to crash the scene? Keep these things in mind as you go about your daily performances and allow yourself to be the center-stager you’re meant to be!

Stay tuned to find out if my lupus is still eager to be center stage, or if she's willing to stay stage left for awhile. I'll let you know soon!


This Moment said…
I found your blog a few months ago and it's nice to have to check in with - I've had lupus for 13 years and I've had ups and downs and right now I'm in a "down" - it's nice to see others who can share their story!

Thanks! Jill

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