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 Iāve 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 Iāve had to work at developing them. And Iāve had to listen and learn. Every time.
Oh, I've tried ignoring my
mistakes. In my fourteen years with lupus, Iāve made the same decision over and
over again, each time hoping for and expecting a different result. But thatās
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 Iāll 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 wonāt yield the result I
want. So Iāve learned not to do them. (At least most of the time.)
Taking note of this iterative
process, and choosing to build upon the knowledge Iāve 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.
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: Iām not complaining. He travels so little, that I
consider myself very lucky.) But because heās in charge of picking up Deirdre
from school every afternoon (which also involves taking Bernadette off my hands from 2:30-4pm),
thereās some juggling to be done when heās 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 ārest timeā 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 didnāt 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 didnāt get enough real sleep during the afternoon.
So I rejiggered again.
Thus, weāve come to the third week of Johnny's travels. In an attempt to
build upon the knowledge Iāve gained, and in an effort not to make the same mistake again, Iām calling in the recruits. Iāve
asked my sister (who could write an entire book about selflessly helping others),
to watch Bernadette for two hours during the afternoon.
Iāll get a nap. At the right time. Without distraction.
Iāll be able to pick up Deirdre. Rested. Recharged. And in a good mood.
And Iāll have asked someone for help.
See??? Iām learning!!!
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