Wednesday, September 3, 2014

Lupus: knowledge is power; sleep is prodigious!

"If at first you don't succeed...maybe you shouldn't try again. At least not for awhile."

Remember how I was going to try a little mid-afternoon experiment last week, to see how flexible I could be with my afternoon nap? Well, it didn't go very well. Or rather, it went. But not the way I was hoping it would.

About a week ago, I made plans to drop off a gift to a friend at the unheard hour of 2pm. (Unheard of because I never, ever plan to do anything at 2pm. At two o'clock, I'm either on my way to nap, furiously finishing up the task at hand so I can nap, or half way to the land of nod already.) But this was the plan - schedule an errand so that it gently coincides with my nap, to see just how flexible I can be in managing my afternoon fatigue.

If all went as planned, I would run my errand from 2-3:30 pm, and the miraculous boost of energy I've been experiencing every few days would kick in. I'd feel alert and clear-headed for the duration of the errand, and would return to take a nap before my fatigue set in. My goal wasn't to cut out my nap completely. It was simply to see if I could conjure up that mysterious albeit appreciated dose of adrenaline that I've been feeling. Not just by happenstance, but rather, when I needed/wanted it.

So I tried my little experiment. I got to my errand at 2pm. I visited with my friend for a bit, yawning a time or two, but still enjoying myself because the fatigue hadn't hit yet. I excused myself at the planned departure time of 2:45pm, feeling decent, but slightly drained. That oh-so-familiar indication that the gas is just...about...to...run...out. As I pulled out of the parking garage, I knew I wasn't too tired to drive, so I headed for home. But halfway home, I hit a wall. Not THE wall that lupus patients talk about when referring to their debilitating fatigue. But a sufficient enough wall that I cranked up the hip hop music station on the radio, and rolled the windows down, so that I could remain alert for the rest of the ride. (Please note - in my life, I have pulled over many a time to rest when I was too fatigued to drive. Thankfully, this wasn't one of them. But, I'll admit, the fatigue was mounting fast!)

I pulled in the driveway, feeling that my experiment had failed. As I trudged upstairs, I couldn't help but feel dejected. Before today, I had had visions of me popping out of the car, and skipping up the stairs to my nap. A nap that was necessary, yes. But urgent, no.  But here I was, struggling to keep my eyes open as I felt the tug of my bed literally pull my body up the stairs.

I put all other thoughts out of my head for the time being, allowing myself to fall asleep quickly and enjoy the recharge that my body desperately needed.

And when I woke up, I realized I hadn't failed. Not at all. I had actually discovered just what I needed to - I that I cannot summon a boost of energy to appear when and where I want it to. I can't bank on the fact that I might feel refreshed every day until 3:30 pm. And I can't mess with lupus fatigue. So during the hours of 2-4pm, I need to plan on being home...to nap, or be very close to starting one.

So with this knowledge, Johnny and I can now officially schedule Deirdre's school year commute. I'll do drop off in the morning, and he and Bernadette will do pick up in the afternoon. That's just the way it needs to be. And since he's fine with it, I'm fine with it.

Knowing really is better than guessing. And trying it once is better than wondering for weeks. Who's to say I can't try again in a few months, or next semester? My Cellcept continues to work wonders, along with the rest of my magic little pills. Yesterday, for instance, I was able to comfortably put off my nap until 2:40pm. It gave Johnny a little bit more time to work, Bernadette a little bit more time to play with her mom, and me a little boost of encouragement that I really am getting better. Every moment that I don't get hit with debilitating fatigue, I feel like progress is being made.

As Johnny and Bernadette headed off to pick up Deirdre at school yesterday, off I went to take a nap. A much needed and respected nap. One that won't be going anywhere anytime soon!

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