Wednesday, July 9, 2014

Gauging the success of my lupus nap: Letting the numbers talk.

If you can believe it, I've been taking almost a 2-hour nap every afternoon for the past 11 years. It's become a part of my daily routine that I cannot, will not, and do not bypass. Too much good has come from napping - which you can read about here. Of course, every once in awhile, I have a moment of wishful thinking where I longingly say to myself, "I bet by this time next year, I'll be healthy enough not to nap every day." But that day never seems to come. I get tired every day, so I nap every day. And for me, that's okay. I've realized whether or not I need a nap isn't an indication of how healthy I am. In fact, if I'm healthy because I take a nap, so be it. I have no intention of messing with something that works!

My nap began after a stint in the hospital in August of 2003. My doctor admitted me to the hospital, where I was diagnosed with lupus-induced pancreatitis, severe anemia, and internal bleeding. I went on to have a series of blood transfusions, a slew of exploratory procedures, and was put on a clear liquid diet for several days. In the end, I was in the hospital for a total of 7 days. My doctor told me it was a pretty close call, and after I was discharged, I knew I wanted to eliminate those close calls as much as possible. So I started making changes to my lifestyle, one of which was adding a nap to my day. Even before I was admitted to the hospital, I'd talked to my supervisor and HR director about an alternative work schedule, requesting a shorter work day in order to get home and nap before my debilitating fatigue hit. We agreed that I could work 9-3pm, four days a week (instead of until 6pm), and work 1 day from home, all in an effort to fit in that nap. From that moment on, I never returned to full time employment, and I never missed a nap. At least, almost never.

And while I no longer question the necessity or value of my nap, I don't think I've actually quantified the benefit of my nap before...until just a few weeks ago. It was the day I went to the spa with my sister, which I blogged about last week. As I was completing the necessary health history paperwork prior to any spa service, I went down the list of questions, answering as I always do: yes to arthritis, yes to joint swelling, yes to kidney problems, heart problems, breathing issues, etc., etc. (Note: I used to get a bit unnerved by health-history paperwork - you can read about the ordeal of filling out my flu shot paperwork here - but I've learned to try and take it in stride. After all, with all of the "x"'s I put down, the fact that I'm still alive and kicking is a blessing in itself!)

As I completed the health paperwork, I came across a question I don't think I've ever seen on a spa form. The question was this:

"How are you feeling right now, on a scale of 1 to 10, 10 being the best?"

And it took me a moment to assess: I was really tired, my joints were a little swollen, and I didn't know if or when I was going to get a nap. So truthfully, at that very moment, sitting there with an overdue nap weighing on me, I wasn't feeling too hot. I was at about a 6. And a half. At best. So that's what I put down. And I was quite surprised that I actually felt that crummy.

I finished the paperwork, handed it off to the associate, and promptly found my way to my napping room, where I slept soundly for over 90 minutes.

After I finished my nap, I rejoined my sister, relaxing in the "serenity room" with hot tea, delicious snacks, comfy lounge chairs, and soothing music. As I sat there, enjoying my tea and snacks, fully rested and looking forward to my treatment, I realized I was no longer a 6.5. I was up to a 9.5, just like that.

All it took was a nap. My swelling was all but gone. My exhaustion was gone. My anxiety was gone. And I felt fabulous!

Since then, I've made a mental note every couple days of how I feel just before I nap, and just after I nap, and it's a remarkable difference. Some days, I actually don't feel too bad at the start of my nap. But inevitably, when I wake up, I feel a whole lot better.

So if there was any doubt before, there's no doubt now. My napping ritual is a success. And now I have the numbers to prove it!

1 comment:

Rachel Zaydak said...

Hi Sara,
I am new to your blog, and still pretty new to having Lupus so my condition is still very unstable and I have a lot of life adjustments to figure out still. I am having more trouble with these life adjustments because I am just 23, single and for most of the year traveling and living in Spain teaching English..so I am still very much so in the information-collecting-trial-and-error-application for how to deal with Lupus. I could use some advice on the napping stuff. Of course, I struggle with fatigue. I don't like napping because I don't like stopping my day and cutting out things from my lineup for the day--but I realize now this is something I need to accept and work on with Lupus. However, another thing I struggle with is anxiety. This is new to me this year. I have a lot of trouble falling asleep and staying asleep at night because of feeling illogically anxious and it goes the same for naps. Even though I am completely spent, I lie down and have a lot of difficulty falling asleep. You mentioned in your post that your napping helps to control your anxiety as well as all the other beneficial things it does for you. However, was there a time period before you got into such a good, solid schedule that you had trouble actually getting your body to fall asleep when you laid down for your naps because of feeling anxious? Did having anxiety ever make it difficult for you to take naps despite being fatigued? Did it take some time and patience for you to achieve such a good sleep routine? Do you have any insight on these things? Or your other readers? I would be very grateful to hear about your experiences with this or advice. Thank you so much! Sorry for such a long post!