Sound familiar? You plan to do something, having been planning for weeks. And then…Here it comes again. Wham! Fatigue like a brick squashing a tiny bug. And no matter how much encouragement others might try to give, all those plans are shredded and gone. You feel bad because you can’t do something enjoyable. You feel bad because you think you’ve let others down. And you feel bad because, well, you feel bad from the flair and the disappointment and the sense that no matter how hard you try, your “normal” life just seems to always fall apart.
If you have chronic illness, how do you ever plan ahead?
I’ve found the simple answer to this is, “You can’t, definitely.”
But the longer answer is a bit more complex. I do make plans. But I couch them with the caveat that I might not be able to follow through, even at the last minute. (Yes, there have been times when I’ve been nearly out the door, but haven’t gone out because of that sudden, crushing fatigue.) I also try not to pack too much into one day (learned this the hard way – still learning, in fact!). One fun thing at a time – so there can be other things at other times. And, I try to plan ahead with people who will truly understand; there is no need to heap guilt upon disappointment on ourselves, planning activities with people who don’t have compassion for what we’re going through.
Traveling brings up problems of its own, of course. I recommend (and get) trip insurance just in case and allow for rest days on either end of a trip. I also reserve a wheelchair at the airport; I don’t need it each time, but having it there has more than once made the difference between holding extreme fatigue at bay and not.
If I’m really looking forward to an event, I know that there will be a certain amount of “positive stress.” We lupies and others with chronic illness need to take this into account, too, because stress is, after all, stress, and we have to manage that as we do other not-so-positive stress. All part of planning ahead.
Even with the “best laid plans,” illness can bring us down. So, we do best to cultivate a strong and willing spirit, one that accepts all that God brings and all that happens as part of a whole, wondrous life. When I plan to do something, I always remember that, where there is God’s will, there will be a way. And if it isn’t meant to be, I give myself permission to rest and give thanks for friends who understand and the times ahead when plans will become activities and, afterward, cherished memories.
Blessings for the day,