At a recent lupus support group meeting, I listened to a friend of mine describe the tall order of trying to enjoy an evening out with friends while in a flare. Boy, do I remember those days.
She was explaining how difficult it can be to a) get dressed for the occasion (a painful, grueling task in and of itself), b) make the trip there, c) arrive with a smile on your face, and d) attempt to sit upright during a meal when it's painful to chew, you're not hungry, and you feel absolutely awful. All of that, she explained, was taxing, yes. But the most exhausting part for her? The kibitzing, the chitchatting, and the catching up. She said simply carrying on a conversation - attempting to follow what others were saying, processing their comments, and then trying to chime in with her own two cents - was beyond her capabilities.
In 10 years with lupus, I've never heard anyone say that before, and yet I couldn't agree more!
I remember so many evenings out with friends where I would sit completely still, not uttering a word, in fear that I would zap my energy too early on in the evening and have to leave before making what I felt was a proper attempt to socialize. As I struggled to keep my eyes open, much less my ears tuned into the conversation, I would try to smile in agreement every once in awhile, just to convince myself that I was actually taking part in the evening. But the idea of actually responding to a question or participating in the conversation was out of the question. It took every ounce of energy I had just to be there - formulating a sentence was not an option.
What an awful feeling it is not to be able to count on our bodies to go the distance...but how ridiculous that we ask our bodies to perform when they're simply incapable of doing so in the first place. I personally had no business being out and about when I was sick. I belonged in bed, resting, and recouping - not trying to prove to myself or anyone else that lupus wasn't going to keep me down.
And, thankfully, after years of living with lupus, I've learned that it's okay to stay home. It's not about logging social hours, or pushing your body to do what you think it should be able to do - it's about taking care of yourself today so that you can be around tomorrow.
I now understand that in turning down an invitation to dinner, I'm not letting lupus win - I'm just acting responsibly. I'm choosing to live well - and I certainly sound smarter doing that than I do sitting around a table not saying a single thing. How witty can silence be, you know?