Following my lupus instinct - knowing when too much is enough.

About a month ago, I flew up to Boston to participate in Lupus Foundation of New England's Annual Symposium. I was looking forward to the event, and had worked closely with the Foundation's kind and understanding director on travel arrangements to make sure I didn't overdo. I couldn't very well make myself sick traveling to an event to speak about living well! The event was on a Sunday, and ran from 9-3pm (I didn't officially have to be there until 12pm), so I had options:

Option 1) I could fly in on Saturday evening, stay over in a hotel, wake up refreshed for Sunday's event and then fly out that afternoon, napping on the flight home.

Option 2) I could fly in early Sunday morning, participate in the event, and then stay over Sunday night, getting a real nap in a real bed, and fly out Monday morning.

I turned to my unofficial travel agent (aka Johnny) for help, and we decided on option #2. The way my lupus fatigue works, I tend to do okay even when I have to wake up early, as long as I'm able to catch up on a good nap in the afternoon. And if I follow it up with an early night to bed, I do particularly well. Option #1 (forcing me to miss a nap, even if I'd started the day rested) might have handicapped me for a day or two afterward.

So I went with option #2, and the Foundation was very accommodating.

The weekend of the event arrived, and I headed off to the airport on Sunday morning. I was tired, but not exhausted, and my adrenaline kicked in once I arrived at the event. I had energy to spare up until the close of the event. (My body seems to know when a nap is pending!) Then, as planned, I headed up to my hotel room, and sacked out for a solid 2 hrs. I felt fabulous once I woke up, and even better after I had a bite to eat. In fact, I felt so good that I thought to myself, "Do I feel good enough to just fly home tonight? I do. I DO feel good enough to just fly home tonight."  So as I sat there, in my hotel room bed, with the tray of finished room service in front of me, I convinced myself that in the next 60 minutes, I should make a mad dash for the airport, catch the next flight to D.C., and be home in time to get a good night's sleep in my own bed.

But as I made my way to the bathroom to freshen up and collect my toiletries, I started to lose steam. Like major steam. It was just after 5:30pm, and I'd woken up that morning before 6 am. I'd flown to Boston, made a Living Well presentation, kibitzed with program attendees for several hours, and manned my busy pillbag and book table at the event. Now, I was in the comfort of a hotel room, with a luxuriously quiet evening ahead of me, and I'm thinking about racing to the airport to do the travel thing all over again?


Was I really going to test the limits of my lupus body? Was I really going to second-guess myself (not to mention my husband, who is the best judge of how travel affects my body), and fly up and back in the same day? Was I really going to ignore the generosity of the Foundation, who had been so accommodating in making sure I traveled when and how I needed? Most importantly, was I really going to ignore all of the things I just talked about in my presentation - about doing what's right for your body, about pacing yourself, about embracing the disease, about working with it, rather than against it?

Of course I wasn't. I changed into my pajamas, crawled back in my oh-so-comfy bed, grabbed the book I'd brought, and settled in for a nice, quiet, leisurely evening by myself in the comfort of my hotel room. Just a few minutes before 8pm, I realized I was exhausted. So I pulled the curtains, turned off the lights, and went to sleep.

When I woke the next morning, I realized I'd just had the best 12+ hours of sleep I've had in years. And to think I was going to muck it all up by flying home early. I'm so glad I took a moment to think things through. I'm so glad I didn't allow myself to be fooled by my burst of energy after my nap. I'm so glad I had enough lupus years under my belt to know when to I needed to relax and recharge.

And I'm glad I know when I've done enough for one day.


Lynn Vernon said…
42I am just learning when it's time to take a break. I have had Lupus for 20 years and it seems like the predictability factor doesn't always work for me. I am now finding it almost impossible to work as a nurse. But I am learning when I am tired just put my feet up and try to nap for a little while.
Sara Gorman said…
Napping can do temporary wonders, huh?! I can imagine how long and demanding your work schedule must be. I hope you're able to figure out a way to make it work better for you. I know a few of my nurse friends with lupus have struggled with the same thing. One just went into teaching, in fact, which seemed to be a better option for her. I hope there are alternatives for you, too! Thanks so much for commenting!

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