About two weeks ago, I woke up to a little joint pain. The following evening, I went to bed with a little joint pain. When I woke up with joint pain the following morning, I knew it was time to take action. Per doctor's orders, I upped my prednisone, and of course, those magic little pills worked wonders, although the joint pain resurfaced morning after morning. But eventually, after almost two weeks of increased dosage, I managed to resume my normal 5 mg every other day, with no joint pain in sight. But it wasn't without a little work on my part, in addition to the medicine.
Because joint pain is so rare for me these days, I can usually pinpoint what might have caused the increased disease activity. If I take a quick inventory of my habits for the previous week or two, I usually see a few areas of my routine that I've let slip a little. Some slip-ups are within my control, others are not - but it always helps me to make a quick list of "culprits", so I can see how best to get back on track.
I make this list not to overwhelm or to nit pick. Rather, I do it so that I can a) feel like I'm doing something to help my lupus predicament, b) determine what, if anything, I can change about how I've been conducting my daily routine, and c) take stock of the cumulative effect of my actions.
Here's my laundry list of culprits during the week or two in question *Went to bed after 11:30 or 12am three nights in a row. (Duh...)
*Pushed back the start of my nap until 3 or 3:30 pm several days over the course of the week.
*Stressed myself about a deadline I had with our architect. (I know - I need to re-read my own post !)
*Took on a couple of extra projects for my Pillbags, all of which I just jammed into my already-spoken- for time during the week.
*Got up with the girls in the middle of the night several nights due to their illnesses. (Croup and night terrors - ugh!)
*Reduced my afternoon babysitter from 5 days to 3 days, due to her softball practice. (I knew this was coming...and I KNOW I can manage...I just have to be more responsible about my naps and sleep at night.)
* Fought off a cold and sore throat the girls have been passing back and forth.
*Skipped exercising for about a week (handicapping me both physically and mentally - I need my 15 minutes three times a week!)
Looking at this list, I realize that although my symptom flare-up was annoying, it might have been avoidable. And avoidable is something I can work on. This list illustrates that lupus doesn't render me incapable of doing things, in general. I'm not incapacitated by individually staying up late, shorting my nap, or skipping my exercise...it's just too tall of an order to do them all at the same time.
I can't tackle all of this in the same couple of weeks, much less consecutive days! I have to choose, and choose wisely: Maybe I have to put off the Pillbag projects, if the renovation is in need of my attention. If I'm shorting myself on nap time, I have to make sure I make it up at night. It's not about sacrifice to me - it's about striking a balance so that I stay healthy, stable and strong. It's about being well enough so I have the choice of which projects to take on...rather than running myself into the ground so I lose that choice altogether.
Here's a quote from my book that touches on this very thing
"Remind yourself that, while your disease limitations force you to make decisions, with decision-making comes the advent of choice." ---Despite Lupus: How to Live Well with a Chronic Illness, page 73