Looking back blues

I was recently looking through some old photos - from high school, college, and even my first few years out of school - and I was shocked. Those outfits! And that hair! Who in the world was in charge of my "look" back then? Thank goodness those pictures aren't digital, otherwise I'd feel obligated to post a couple of them here.

But my question is this: at what point will I be able to look back, and not say, "Did I really pose for a picture wearing that?" Some of those pictures weren't taken that long ago, and I can even remember choosing to wear some of those outfits. Truth is, I thought I looked pretty darn swanky. And yet, I look back now and think, "What was I thinking?" Take what I'm wearing right now. Am I going to look back in 10 years and say, "That is the ugliest sweater ever"? I don't think it's bad. Time will tell, though, won't it?

I had a similar experience looking back at some of the spreadsheets from my early lupus years. My chronic control spreadsheets have been the topic of conversation among Despite Lupus readers lately...so I recently took a peek at my files for reference. Flipping through, all I can say is, "How could I have let myself get so sick?" I can't believe the amount of pain and discomfort I allowed myself to experience! When I look at the sea of check marks lining the pages of my spreadsheets - I'm appalled that it took me more than a month or two to figure out that my version of "okay" was anything but.

As I flip through the charts, I'm amazed at the revealing notes that I jotted down in the margin...like the side note where I say, "Headache and vomiting, from work to mall, 30 min nap, to cooking class and back to mall." You think that might have been a little much to fit in after a full day of work, particularly when one is vomiting? Of course!

The missed naps, the crazy work schedules, on top of the symptoms that just wouldn't quit -at least I was being honest as I tracked my life back then. It's obvious that I was pushing my body beyond its limits, but from one day to the next, it was nearly impossible for me to grasp how sick I really was. I was just doing my best to get through the day. And whether it was swollen joints, fevers, swollen glands, or pain in every joint in my body, I'd become accustomed to that level of discomfort. I didn't know what it was like to feel good anymore. Of course, I didn't like feeling awful...but I just didn't think I had a choice. I saw life with lupus as a test - if I could juggle those symptoms while maintaining my busy, driven lifestyle, I was a success. If not, I was a failure.

Here's an excerpt from my book, Despite Lupus, which illustrates this very point:

breaking the spell

At some point along your journey, you’re bound to lose your objectivity, too. Given the myriad aches, pain, swellings, rashes, and fevers to which you’re subjected, do you really know what “good” should feel like anymore? I’m not asking if you can describe the feeling; I want to know if you remember what it actually feels like. I bet it’s been so long since you felt 100%, you no longer can imagine that exact sensation. Passage of time, conditioning, and relativity have recalibrated the measuring stick you now use to determine how much hurt is enough, and how truly sick you are. The gauge you use today can only be the pain from yesterday, but how insufferable was the pain even then? Maybe your complaints are fewer than they’ve been in the past, but why should functioning with any health complaint suddenly be acceptable? An objective assessment of your health is no longer possible because you’ve reduced your expectations to accommodate the changes in your functionality and appearance. The ailing, broken-down, failing body you see in the mirror somehow looks more familiar than not. It’s as if “normal” has been redefined to mean “that which is bearable” and the ache in your hip or the joint pain in your hands is now customary. Your standards have been compromised.
Now it’s time to reconsider what “normal” should really look and feel like

Looking at those charts now, the only failure I see was my inability to stop. To stop and say, "Enough." To stop and say, "Let it go." To stop and say, "I'm worth more than this."

Don't ever forget - you are, too.


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