One of the big challenges that comes from living with mitral valve prolapse syndrome/dysautonomia is never knowing how I’ll be feeling on any given day. This makes advanced planning a bit a tricky, whether I’m trying to set an agenda for an upcoming vacation or just accepting invitations for holiday parties or group activities.
Just this evening, I’m having to decide whether or not to attend a Yule ritual and potluck with the West Hills CUUPS group. I’ve been looking forward to this for some time; I have a gift ready for the gift exchange and even made old-fashioned fudge for the first time. But about 30 minutes ago, some problematic symptoms surfaced, and I find myself in the position of having to watch myself carefully and make a decision about whether or not to beg out of the event at the last minute.
People who don’t know about living with a chronic illness may think I’m a complete flake, because this kind of thing happens fairly frequently. Sometimes MVPS/dys will hit me with something as simple as a headache, whereas other times I’ll find myself having chest pains, IBS trouble, vertigo/dizziness or even a full-blown panic attack. And this can all happen with little to no warning.
It’s a bitch.
The good news is that people who know me better understand what’s happening. They’ve seen me have to cancel out of activities and events that I’ve had my heart set on, because I found myself with a sudden migraine or was up for three nights straight with insomnia. They’ve also seen me maintain a remarkably positive attitude during it all, because what else can you do? Complaining doesn’t change it.
Some days, the best I can do is recognize what my body is capable of in that moment, and make the best decisions I can based on that — and when the outcome isn’t what I’d prefer, I can keep hoping and praying and taking care of myself as I’m able so that tomorrow will be better.
I know this dilemma all too well. I think trying to explain it — suddenly not feeling well interfering with plans — can be harder than dealing with the illness itself, sometimes. It’s rough coming off as unreliable to people who aren’t close when, really, we want to be there.
Like you said, though, what else can you do! Regret never does anyone any good, so we just try again next time.
P.S. I replied over on my blog as well!