My personal hair stylist Deirdre came to the rescue the other day. My new hair growth (from last year's bout of hair loss) has recently gone crazy (thankfully), and I have thick sprouts of short dark hair everywhere on my head. Most of the thick sprouts are behaving fairly well, falling into place just as they should. But the clumps where my head curves on the right and left have minds of their own. They prefer to stick straight out and up. Yikes! They just need another week or two before they'll be long enough to start laying down naturally, but until then, they require some serious taming.
That's where Deirdre came in. The clumps have been in this stage for about two weeks, and I've been using a hair dryer and my big roller brush to add fullness around the curves, hoping that the fluffier I make the rest of my hair, the more the clumps will blend in. But unfortunately, my strategy hasn't worked. Instead of blending in, I was adding oomph underneath the clumps, and they were sticking out more than ever. It looked like I had two little horns coming out of both sides of my head. I thought I looked like Maleficent. Bernie preferred to call them pony piggy horns. Either way, it was not the look I was going for.
So Deirdre offered to help. One morning, when I had a particularly bad case of My Little Pony bed head, she said, "Hey, Mom. Why don't I try to do your hair?" I jumped at the chance, primarily because I love when the girls play with my hair, and for almost 9 months, my thinning, falling hair couldn't be touched, but also, because I really needed a new styling strategy. And Dee always thinks strategically.
Within minutes, she had worked her magic. She had a spray bottle of water, and she just kept brushing and spraying, brushing and spraying. Turns out I didn't need to fluff the clumps up, I needed to tamp them down! So now - I have an entirely new approach. I still use my roller brush, but I start mid-way down the sides of my head, allowing those clumps to be as flat as possible. They stay down throughout the day, every single time. Who knew I was actually accentuating the problem, rather than minimizing it?
I've been guilty of this before. I used to try so hard to make lupus seem as inconspicuous as possible - only to find that I was making it more obvious than ever. For example, I used to think that to get something done, I simply needed to push through - ignoring signs of fatigue, fighting off pain, all in an effort to act like lupus wasn't taken its toll. Had I stopped and acknowledged my symptom activity throughout the day, I thought I would be accentuating the limitations of the disease. I thought accommodating for the illness was giving it attention it didn't deserve.
But here's what was really happening: by pushing everyday, my body would be forced to crash every night. I couldn't go out. I couldn't get through dinner. I was a crumpled, aching mess by the time 6pm rolled around. I would go straight to bed, and wake up the next morning still fatigued and hurting. I continued to pay for pushing through, and would be forced to mask my symptoms for days. Not quite the textbook definition of "inconspicuous", right?
I learned that if I actually accommodated for the disease - in this particular case, by taking a nap mid-day - I could avoid the crumpled mess stage altogether. I no longer lost my evenings to fatigue. I never had to skip dinner because I was lifeless. I never woke the next morning still "paying" for the day before. I could simply take my break, and life could go on as normal. I know there's the disruption of the nap, but that's NOTHING compared to the upheaval of getting sick for days!
So the next time you're making plans to go out, scheduling a vacation, or even just outlining the appointments for the week, think about how conspicuous your lupus is going to become. Are you accommodating for your symptom activity, so that you don't disrupt your life in a big way? Or by ignoring your need for a little extra sleep, a little less stress, or a lot less running around, are you allowing the disease to make an even bigger mess of things than it needs to? I hope it's the former, but if you need more examples on controlling the role of lupus, click here!