Choosing wisely: putting our lupus needs first.

Several weeks ago, I found myself feeling a bit faint during Sunday mass. It was no surprise - it was Palm Sunday (the Sunday before Easter), and the gospel reading (during which you stand) is traditionally longer than normal. (This happens every year, by the way, so this longer reading came as no surprise!)

When I started to notice my light-headedness, my first reaction was to just deal with it. Everyone else in the church probably felt the same way I did, so I told myself to just hang in there. I waited another minute or two, and noticed that the feeling wasn't getting any better. So then I told myself that I couldn't possibly sit down, because what would everyone around me think? I looked like a healthy, active mom - why should I get to sit down while everyone else was toughing it out? Just stand there, I told myself, grip the pew a little harder, and concentrate on the words of the reading.

And then I wised up.

I realized I wasn't even capable of focusing on the gospel because I was too busy trying not to be light headed. And I was so worried about what everyone else would think about my actions, I wasn't considering what the best action was for me to take. Right then, I had fallen into the same trap I had so many times before with lupus.

I used to expend so much energy trying to keep up appearances. Acting like everything was okay, and pretending that lupus wasn't affecting me left me no energy to actually make good decisions, take care of myself, or enjoy life at all. Instead of successfully living within the boundaries of the disease, I was struggling to defiantly live without any accommodations at all. And we all know how very ineffective that turned out to be!

So realizing that my energy was being misdirected, I re-evaluated. With a clear and level head, I realized I should just sit down. I needed to be present and accountable - for the girls (who were being unbelievably good during the reading), for the words of the gospel, and for the rest of the day. So if sitting down allowed me to return to a normal state of being, then that's what I needed to do.

So I sat. And the light-headedness immediately went away. And I felt normal once again.

And if you can believe it, within three minutes of me sitting down, an older gentleman a few pews in front of us fell to the floor. He'd fainted. Immediately the mass was stopped, the priest and other medical professionals in the congregation ran over, and an ambulance was called. As I sat in the church, saying a few prayers while the entire congregation waited patiently for the EMT's to arrive, I reflected on my decision to sit down.

And I decided that I'd chosen wisely.

So the next time you're worried about doing something to accommodate for your illness: taking sick leave from work, carving out time to take a nap, asking for help when you're out and about, passing on a hand shake or a hug because your joints are aching, or taking a rain check on an outing because you're not up to it - feel free to use this story as a reason for your actions. I'm happy to take the heat for your decision to take care of yourself.

And I guarantee you'll have chosen wisely.


The Patient Doc said…
I haven't learned how to do this yet. I still put the needs of my patients ahead of my own. But eventually. I'll learn that I have to take care of myself before I care for others.
Sara Gorman said…
Well, I'm sure your patients are appreciative of your efforts! I'm sure they would learn from your good example, though, too. A doctor friend of mine said the best thing he did for his patients was started taking care of himself. He'd let himself go - working all hours, not exercising, not eating well - and his physical appearance (and mental state) were suffering because of it. But once he got himself back on track, his patients sat up and noticed. You might be surprised how even more inspiring you could be to patients who struggle to make good decisions for themselves, too! ("If my doctor's doing it...maybe I should, too" kind of thing.)You're already doing that with your blog - your site is great!
You always present a great example that I use to reign myself in. I am a firm believer that Lupus "guilt" makes me just as sick as the Lupus. Sometimes it is defiance - but most of the time it is just stubborn silliness on my part. Thank you again for the perspective.
Aymie said…
Oh the lupus guilt! After 2 and a half years of remission It seems like I'm getting more and more bad days, meaning more sofa days. I keep feeling guilt for those, forgetting that I may have pushed myself a little too hard at spin class, spent a little too long enjoying the sun, forgetting my meds a little more often, not eating as well as I should, finishing my masters exams without any thought of resting.
I think what I'm getting at is that your post, as often happens, came at a right time: a sofa day that has me feeling guilty that I'm not applying for jobs, not taking care of the fiancé, not clearing the house up. Instead, I'm having a sofa day to rest up for a crazily big wedding we've got on tomorrow. (Not ours!)
Sara, thanks. You did it again :)
Sara Gorman said…
Thanks so much for your comments! We are very good at stubborn silliness, aren't we? :) I appreciate u being able to relate!
Sara Gorman said…
I hope u had a GREAT day on the couch! I find the days I "take off" are sometimes the most productive. I can literally feel my body recharging -- which is essential for efficiency the rest of the week! Thanks as always for your comments. I always love hearing from u!
Anonymous said…
Thank you. These are hard lessons for me to learn. I am pregnant and have lupus, and I'm working in a challenging, full-time job. I'm learning that my gauge of what's doable is skewed, and I'm trying to listen more to my husband when he tells me I'm overdoing it. It's hard, though. I feel weak, lazy, and frustrated when I can't seem to keep up. I'm taking little steps though, and hopefully doing better at taking care of myself. Thanks again for the reminder :)
Perrin said…
Your posts and the accompanying comments are a God-send. When we're used to all-out productive lives, it is so very difficult to scale back in any way, shape, or form without lupus guilt (LOVE that term) and feeling lazy. It's been difficult for me these past nine years to come to terms with these new limitations. The up side (and we must ALWAYS look for the up side) is that now I can pursue my writing and art as never before--still with limitations, but hey, we can't have everything.
Sara Gorman said…
I agree 100%! I NEVER, and I mean NEVER would have written my book or started a blog (or for that matter, launched into the Pillbag business), if my life hadn't taken a turn with lupus. Glad you've found other things to sink your teeth into...all within the limitations of the disease. Thanks so much for your comment!

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