2 steps forward, 1 discouraging step back

I know, I know - it's a cliche that you've heard a million times. But unfortunately, it's oh-so-appropriate when it comes to living with a chronic illness.

I refer to the constant battle in my book - the mental gymnastics of "yes, I'm okay with this; actually, no, I'm not" and the physical struggle of "yes, I can do "x"; oh no, I guess I can't." This constant state of flux can be disheartening, and alarming at times, but from what I understand, it's a natural occurrence when it comes to the slow and deliberate act of healing.

I imagine part of the roller coaster effect may have something to with our own expectations (you get so far ahead and expect that momentum to continue...and when it doesn't, it's a big fat bummer), or perhaps it's just a natural response we have toward improvement (you're feeling better, and better, so you do a little bit more, then a little bit more, and then wham! You're set back three days.) It could also be a product of time (Shouldn't the medicine have kicked in by now? My flare couldn't possible last this long, could it?) Whatever benchmarks we're using to gauge our progress, we just have to keep in mind that lupus doesn't use the same metric we do.

Lupus doesn't seem to care about time, or momentum, or expectations. Of course, we wish it did, but whatever gauge the disease is using, we don't have the ability to control it. When life takes a course of its own, like it does so very often, we just have to sit back, and do our best to hold on. Of course, it helps to keep your chronic control chart, and it's important to make good, healthy choices along the way, but there are going to be set backs. And when those set backs occur, it's an opportunity for spiritual progress and mental growth to take place.

We're not in control of everything, including our disease - now how are we going to deal with it?

Are you going to kick and scream, letting everyone know just how blown away you are to find out you can't control every last moment of your life, or will you relax, take a deep breath, and continue on with grace? I've had the opportunity to try both approaches, and you can imagine which one yields the best results.


britta said…
Hey Sara,

I found your blog from reading Leslie's over at Getting Closer to Myself! Although, I don't have lupus (have been tested for it many times before), I have Chronic Lyme Disease, and I was thinking about picking up a copy of your book. It sounds like I could relate on many levels with it and with your story!
It may have to be a summer read for me!

Happy Earth Day!

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