The digital calendar has got to be one of the greatest inventions of current times. No joke, I used to sync 37 calendars on my phone. Yeah, I really did. That’s a “3” and a “7.” Let’s see… there was one for the hubs, 3 for homeschooling stuff, 1 personal, 2 medical, and countless others for my job at church. Oh – and there were the blogging and social media calendars, too.
Chris says I need therapy. I’d have to agree on this one.
I just hate it when he’s right.
But the best of calendar savvy is not enough to tame the unpredictability of autoimmune disease. You can’t tame that kind of stuff. In fact, the only thing you can count on with CD is just that … that you can’t count on it. For anything. Any of the time. At least, it feels that way. Trying to keep some sort of a schedule with CD is challenging. I use that word only because there isn’t a perfect word to describe the dilemma and the feelings about this dilemma that I’m really talking about.
There are no cookie-cutter answers and scheduling isn’t a one-size-fits-all, but here are some tips I’ve discovered for successful scheduling when living with chronic disease.
1. The only predictable thing about chronic illness is its unpredictability.
Always being able to predict what you can achieve and when you can achieve it is not a realistic goal for the chronic disease person (CDP). It just isn’t. The idea has to come about as a mindset shift, especially for the over-achievers who desire the noble character trait of being someone others can always count on.
When you think about it, even the healthiest people are down on their game from time to time. An unexpected stomach bug, waking up with a fever, even heading to a meeting only to find a flat tire. 100% dependability 100% of the time on 100% of our days really isn’t achievable by anyone. Toss a chronic illness in the mix, and this kind of unrealistic self-imposed requirements really is … well…. unrealistic.
2. Schedule cushions are your best friend.
I’ll admit it… I love to stay busy. Am I the only one ?
Sitting still isn’t my default, not even a little. My love language is acts of service, so when people ask for help or want to take a spot on my calendar, I want to say “yes.” I really do. I enjoy helping other people and I like that they feel they can come to me for help. This is one of the hardest parts of being a CDP.
But with even the most nimble of scheduling and planning, the descent of “I can’t do this today” upon your days will collide with your well-prepared to-do list unannounced, unsolicited and very much unwelcomed. Expect it. Know it’s coming. Prepare for it. Chronic disease just demands that we take a different approach to how we schedule our calendar. We must think differently now.
We could all learn a few lessons here, if we’re honest. But especially as a CDP, if you take a shoe-horn approach to schedule your activities and commitments, you shouldn’t be surprised at cancellations and leaving others hanging, along with the frustration that accompanies this. On top of everything else – in fact, even before everything else – CDPs must build in time for rest, and if we do it like we’re supposed to, it can be an hour or two each day, which adds up to 12-15 hours every single week. THAT is a part-time job all by itself!
Yes, chronic disease really does take that much time. And that’s just the rest time. That doesn’t count time for doctor visits, bed days, monthly lab work, going to the pharmacy, exercise routines, or any of the other things a life with chronic illness requires of us.
Being sick takes a lot of dang time.
So... what do we do ???
There’s no easy answer and each person’s answer is different. Each person’s answer will change along the way, even, depending on where they are in the journey. A safe place to start is to build in cushions of time that help us both avoid the “gotcha’s” and incorporate some rest reprieves. Here are two very helpful rules I follow:
1. The rule of 3rd’s.
Yes-yes-no. Take-take-skip. Change it up, sit it out on the 3rd time of a series. For example, get things done for 2 hours, then rest the 3rd hour. Make every 3rd day a rest day. For two days without a much-needed nap, take a nap on the 3rd day. When you’ve splurged on a cookie a couple of times, the next time you want a cookie, skip it and grab an apple instead. Or some almonds. If you normally drink 3 cups of coffee, drink two and exchange the 3rd one for water. Or juice. Whatever group of three applies to you, pivot on the 3rd.
2. The 80/20 rule
Plan 80% of your day and leave 20% open for unexpecteds. Daily rest time should be counted as part of the 80%, it doesn’t go in the 20% cushion because (ideally) it isn’t an optional part of our day. If emergencies and surprises don’t happen and you don’t use the 20% cushion, then you have some extra rest for the day.
Do whatever works for you, but find a way to add cushions in to your week. You’l feel better, be more in control and more in front of the 8-ball.
And who doesn’t like to be on the right side of the 8-ball, right?
3. You're on a different journey now, and that needs to be okay.
I have to swallow hard on this one. There are no words for this particular part of chronic. When you’re already operating at 70% capacity of your old self, and now you have to pull illness-related activities (think doctor visits, ER visits, PT exercises, downtime, etc) from this 70%, it leaves precious little time to do what you used to do. Nevermind having less energy, there simply aren’t enough hours in the day to get all the [former] things done. Even if you can pull from sleep hours and survive on 4-5 hours of sleep for a while, your body will eventually crash. This just isn’t sustainable.
So try to let it go. Recalibrate. Let others serve Jesus by helping you along your journey. If nothing else, set a good example for those who might be in your shoes one day and need to learn how to let folks help them out (maybe your kids?). Have you ever thought less of your friends because they needed help and you took them a meal? Or mowed their grass? Or folded their laundry or washed their dishes? Didn’t think so. Me neither.
Here are some practical question to ask when deciding whether or not something makes it onto your calendar or daily to-do list:
Is it necessary?
Is it something only I can do?
Is it something someone else could do?
Does it have an eternal consequence?
Do I even want to do it?
Is the timing right?
What will I not be doing in order to do it?
Rock on, Rheumies, rock on.