Living Well with Lupus: An Iterative process

I'm still learning. 

I'm still learning how to take care of myself.

I'm still learning how to make good decisions. 

And I'm still learning how to ask for help. 

But I am better than I used to be.

Developing skills to live well with lupus is, thankfully, a process that I’ve been able to build upon. They are skills, because they are abilities I must hone and practice over time in order to do them efficiently and effectively. Some will come naturally. Others are counter-intuitive. Still others I could only learn through trial and error. But I’ve had to work at developing them. And I’ve had to listen and learn. Every time.  

Oh, I've tried ignoring my mistakes. In my fourteen years with lupus, I’ve made the same decision over and over again, each time hoping for and expecting a different result. But that’s not the way a chronic illness works. At least not mine.

Today, I can actually tell you what will happen if I skip a nap. I can describe in detail how I’ll feel if I work until midnight one or two nights in a row. And I know the effects of over-committing myself (probably the most recently-attempted of them all) so well that I could write a book about it. (Okay...so that one was a gimmie.) But I know doing these things won’t yield the result I want. So I’ve learned not to do them. (At least most of the time.)

Taking note of this iterative process, and choosing to build upon the knowledge I’ve gained over time allows me to do things like:

Say no instead of yes next time; 
stay in instead of going out; 
rest instead of fighting fatigue; 
order in instead of cooking; 
opt for a leisurely way to travel instead of a crazy travel itinerary; 
book a babysitter instead of trying to tough it out on my own.

In fact, I think it's possible to not make the same mistake twice, which brings me to my current situation: 

Johnny has been traveling lately. (Please note: I’m not complaining. He travels so little, that I consider myself very lucky.) But because he’s in charge of picking up Deirdre from school every afternoon (which also involves taking Bernadette off my hands from 2:30-4pm), there’s some juggling to be done when he’s out of town.

So I juggle.

The first week he was traveling, I set an alarm at 1pm to remind myself to start the juggle. From 1pm -2:30pm, I set Bernie up with a movie while I rested. We then left to pick up Deirdre at school, returning around 4pm, where a babysitter was waiting to work until almost 6pm. I attempted to nap during that 4-6pm time frame, assuming that my earlier “rest time” with Bernie might not go so smoothly (which was correct). So while my hunch to hire the babysitter was a great idea, waiting until after 4pm to really start a good nap didn’t work so well.

So I juggled again.

The second week Johnny was traveling, I asked a friend of mine to pick up Deirdre from school. This allowed Bernie and I to have a full afternoon of resting, watching a movie, and resting some more. It was DEFINITELY better, but I still didn’t get enough real sleep during the afternoon.

So I rejiggered again.

Thus, we’ve come to the third week of Johnny's travels. In an attempt to build upon the knowledge I’ve gained, and in an effort not to make the same mistake again, I’m calling in the recruits. I’ve asked my sister (who could write an entire book about selflessly helping others), to watch Bernadette for two hours during the afternoon.

I’ll get a nap. At the right time. Without distraction.

I’ll be able to pick up Deirdre. Rested. Recharged. And in a good mood.

And I’ll have asked someone for help.

See??? I’m learning!!!