We were supposed to have an adventure today. I had it all planned – the directions, the hike, even the post-trip burger indulgence.
Lupus had a different plan for today. One that included a 24 hour headache, extreme fatigue, and a nearly non-functional body. So I’m sitting at home – probably giving myself a first degree burn with my heating pad – instead of going for a hike. And I’m thinking about the sudden, inevitable, disappointing side of chronic illness.
I never completely forget that I’m chronically ill, but on my good days I can forget about the lowest valleys I’ve experienced since becoming sick. It’s never long between those valleys, however – just long enough to breathe a sigh of relief and look toward the future with a bit more hope than usual.
Earlier this week I was fortunate to take a day trip to Clemson, SC to see my brother. I managed to accomplish it alone without putting myself into a flare. It made me feel like the next low valley – the next disappointment – was far off on the horizon. Like I didn’t have to worry about it for a while.
I rested for two days after my trip and was very careful to limit my physical activity. I certainly thought I was in the clear to go hiking this morning. You see, Saturday is my best chance for a good day each week, so I get really excited for it. I have Mr. Meena around to drive and take care of the hard stuff; I don’t have to be totally self-reliant. He makes it possible to go further and generally have more fun.
But despite my husband being utterly awesome, there’s not much he can do when my chronic illness makes our world come to a screeching halt. And I’m left feeling disappointed at what could have been, what should have been, what kind of day a healthier person would’ve had.
Disappointment is a huge part of my life with chronic illness.
Disappointment is what I feel when I have to say no so often that I hesitate to ever say yes.
It’s why I always book a hotel with a last minute cancellation policy.
It’s the reason I’m bitter when, yet again, I can’t do something by myself.
Disappointment is realizing that “carefree” is no longer part of my personal dictionary.
It’s my reaction when I run out of coping methods (because I’ve used them all already).
But disappointment is part of everyone’s life, and it’s not something that we can control. Today I did everything within my power to recover – I rested, took pain meds, had a bath – and I finally got to the point where I felt well enough to redeem some of this Saturday with an evening stroll. But, while I was busy getting better, Mr. Meena became terribly sick. There’s absolutely nothing I can do about it. Except wait.
Fortunately (or unfortunately), constantly facing disappointment has given me a lot of patience. We may be staying home today, but there’s always tomorrow.
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