Moment of panic - lupus and the sun

Every few months, I experience a moment of panic - a moment when I realize that the perfect, "works-for-me"  lupus routine that my girls and I have going won't last. I had such a moment about a year ago...when I suddenly realized that the girls weren't going to take naps forever (unlike their mother.) I panicked (unnecessarily), thinking about how I was ever going to manage to get a nap if my girls didn't take one. Could they play safely on their own? Would they be patient enough to wait out my rest time? Of course, before I worried too long, several DL readers came to the rescue, and reminded me that eventually, the girls will go to school. Oh, right. That! And once they're in school, I'll be able to nap whenever I want. No doubt, there will be a short period of time when the girls stop napping but aren't in school full time, but I can handle that. Anything temporary, I can manage.

I had another moment of panic just recently, when I was driving to a pillbag/book signing event. It was a gorgeous day out - the sun was shining and spring was in full force - and I was thinking to myself how great life is. How things really couldn't get any better - with Johnny and the girls, with my ventures, with life in general. And then I glanced out the window, and I saw a mom, standing in the middle of an empty baseball field with her young son. From the gear they had with them, it seemed they were waiting for practice or a game to start - and there wasn't a shade tree in sight, the sun was glaring down on both of them. And I got a queasy feeling in my stomach, and in fact I was almost brought to tears...just thinking about the difficulty of standing in the sunlight for hours on end, watching whatever little game the girls might have going on.

Now, before I get too far down this road, I have to stop myself. Because not only have I blogged about photosensitivity and the many ways to avoid exposure but still enjoy life outdoors, I've traveled to two different countries to give talks where I specifically talk about dealing with the sun and learning not to feel guilty about it. I've even cited examples about kids and outdoor activities, encouraging other moms to let go of the guilt they feel about not being able to be out on the field from morning to night, and instead going out for only the early morning games, or taking an umbrella, or taking breaks in the car every once in awhile.

I'm not saying it's going to be easy, and I'm not saying we're not entitled to feel bummed out by the fact that long doses of sun and our bodies don't mix. But now that I've had a moment to grieve, (see Chapter 1 of Despite Lupus), I need to remind myself that living well, despite lupus requires strategy. It requires forethought, and it demands that I think outside the box a bit - realizing that while I may have some limitations that other mom's don't have, I have the ability to craft a life worth living. I just have to choose to do so, rather than let the disease get the best of me.

So what if Johnny has to man the sidelines while I watch from under the shade tree on the other side of the parking lot? What if I do the school plays and the (indoor) swim meets, while Johnny is the soccer dad? I don't know how it's all going to shake out...but I'm sure my experienced DL readers will tell me. Until then, worrying unnecessarily is a waste of energy. Energy that the mom of a 1-year old and a 3-year old DEFINITELY needs to conserve!


Cassie said…
Hi Sara,
I've been out of touch for a few weeks, as I returned from the mission trip to the Midwest a couple of weeks ago and then, jumped into trying to catch up on things. I had that "moment of panic" when I realized that part of the team's work was going to happen in the blazing sun. Since no one in the group knows about my lupus, I immediately began to fret and struggle! Yet, for the FIRST time I was able to step back and talk with myself. Was I willing to knowingly pay the price of working 10-12 hours in that sun; knowing what price I would pay? First instinct was that it wouldn't be that bad. But, the words in your book came ringing through - I KNEW what would happen. I took a deep breath, walked over to our group leader and simply stated that I could not work in the direct sun because I would pay a heavy price. No explaination - just walked under the shade tree and for the first time, knew that I had made a great step towards my living well with lupus! Yes, I felt uncomfortable and guilty for awhile but soon realized that I needed to be at peace with taking care of me at this moment. Thanks, Sara!
Sara Gorman said…
Three cheers for progress!!! I'm so happy to hear that you put your health and wellness first - primarily because it's good for you, but also because I hope you were able to see that in sidestepping the single, sun-filled day of work, you could actually contribute the rest of the time, rather than potentially missing out because of health issues caused by the sun. So - congrats on a great step forward. (and not a little one, either!) That said, I'm off to rest - 2:30pm and it's my witching hour. I have to pace MYSELF, too!!

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