Once, a few cocktails deep, a dear friend of mine exclaimed “You are flaky. But it’s not your fault.” I laughed and we continued the afternoon, enjoying each other’s company; I hadn’t had to cancel this time.
It hurt a little. But I understood where she was coming from. We make a lot of plans — and then I cancel a lot of them. You see, having a chronic illness means having to cancel plans. It means letting people down and taking regular rain-checks.
It did mean a lot that she suffixed the comment with “but it’s not your fault.” It’s true, I can’t control when I will have a flare up. I wish I could. I really, really wish I could. But, I can’t. I can’t control when my bladder decides to give up for a few days, and my cramping leaves me curled up in tears. So, I continue to make plans and I continue to hope I can make it. But in doing so, I continue to be unreliable and flaky.
But being flaky isn’t easy. There’s a lot of work behind the scenes. It’s true I can’t control when I have a flare up, but I can try to manage it.
Over the last year I’ve started to plan my time a lot more carefully. If there’s an event I really want to go to, I’ve learned that means I need to lay low the week prior. If I get invited to something but I already have a couple of things going on that week, I’ll turn it down — often giving multiple reasons out of guilt. If I have a busy week at work, I’ll be in bed from when I get in the door. Rest is key. If I do too much, I’ll inevitably wear myself out and then get sick.
Once I’ve decided to say yes to something, the next step is working out logistics.
How will I get there?
Drive? Fine. Over an hour each way? Nope. This results in a day in bed with back pain from my sacral nerve stimulator (SNS). Public transport? OK. Over an hour each way? Knackered. Can I stay at someone’s house nearby? Lovely stuff. Basically, just cancel plans the next day regardless.
What is the activity?
Live sports, theater, or music? Will I be sitting or standing? Standing? That’s already looking unlikely. I can’t stand for more than 20 to 30 minutes without pain on a good day. Sitting? Better! Without enough leg space, my endometriosis induced sciatica flares up. But I can deal with that.
Dinner or drinks? I’m there! Unless it’s miles away, in which case, it’s looking unlikely. Sports, hiking, or outdoor activities? Nope. Seriously, are you kidding? I can’t do a lot of activities these days because of my SNS, or what I like to call, my “bionic bum.” No long walks, no hiking, no extreme sports, nothing with a harness, nothing too bouncy… The list goes on. Swimming? Sure. Yoga? OK. Pilates? Controversially, I say no thank you. My pelvic floor is way too tight for that. Arts and crafts? You know what floats my boat. A night in always and forever. You will be my love.
It’s a lot to take on board, right?
This process in itself is pretty tiring, let me tell you. And even with doing all this stuff, there’s a chance my body might just laugh and go, “You thought you were going out? That was a good one. No, you’re staying in bed.” And I hate it.
Trust me, if I could choose to be well and never flake out on a friend again, I would. But it’s worth it. Even if I end up looking flaky in the process of trying, at least I am trying.
And when I do get to go out, you can bet it’ll be the best night ever.