Friday, August 10, 2012

Those unpredictable things called children...and lupus, of course

It's official: Deirdre no longer takes a nap in the afternoon, much to my dismay.

Actually, I shouldn't say that.

I'm pretty happy with the current routine we have going. She still goes in her room for "quiet time" when Bernie and I go down for our naps around 2pm, and she alternates between "art day" and "movie day." On "art days", she can busy herself with crayons, colored pencils, stickers and the like for about 45-50 minutes. On "movie days", she's hunkers down with her portable DVD player for more than an hour. I've added a digital alarm clock to her room so that she can see when her 3:00 pm rest time is officially over, and when that clock strikes three (or as she says, "there's a three at the beginning"), she tiptoes downstairs where she and the babysitter (who arrives at 3pm) are free to play.

Now - are "art days" uneventful and smooth sailing? Not always. Do they yield uninterrupted sleep for me? Not usually. But at least I know what to expect. I know that on "art days" I can't count on a full hour of sleep from 2-3pm, and I have to allow for my nap to extend to 5pm, if necessary. Yes, that means scheduling conference calls and appointments accordingly, but at least I know how to budget my time and gauge the events of the afternoon.

Before we got into this routine, I was a mess. The unpredictability of not knowing what she was going to do from one day to the next was just too unsettling. Some days she'd go in her bed and read for an hour; other days, she'd be in and out of my room (as I've blogged about before) a half a dozen times. I never knew what to expect during that hour from 2-3pm, and the less predictable it was, the more fatigued and frustrated I became.

But finally - we've transitioned - and we're predictable. It's not a perfect system, but it's manageable. And that's the way I like it.

Of course, this reminds me of the beef I have with lupus - the unpredictability, the inconsistency, the unknown. (In fairness, I should probably strike the word "inconsistency" from the list, because as I was crafting this post, I decided that lupus actually is pretty darn consistent - consistently unpredictable, that is. Do I hear any "Amens" out there?)

But to my point, it's not knowing where lupus is going to strike next, how hard, or how long that makes dealing with the disease so difficult. If there were perfect little patterns, or symptoms that followed an order, it sure would make it a lot easier to manage.

So that, then, is the goal: identify patterns in your disease when you can, recognize the triggers of disease activity if there are any, and track the symptoms and side-effects if possible. Establishing a sort of flow chart for our disease has to put us one step ahead of lupus, while simultaneously making it easier to deal with the unknowns, which are still bound to occur. Expect the unexpected - but chart what you can.

So the flow charts for Deirdre's rest time have been drafted - and the patterns have been established. And just like I've done in the past, I will ride out this current state of predictability for as long as possible. Of course, until the next phase comes along...

3 comments:

Amen here too. I'm still new to this and this week is all "but I'm on prednisone why is this happening?" And of course everyone telling me to just push through and it will get better... like I need to encourage my stubborn side!

To Baimeeker - I'm good with the "it will get better" part (because it will...it just takes time!), but don't for one minute listen to those friends of yours telling you to push through! You know what you need to do - listen to your body and react accordingly. If it says, "Stop", you stop. If it says, "Rest", you rest. That's the only way I've found to beat this thing. And I think lupites come with an extra dose of stubborn, don't you?

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In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.