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Three ways to live with MS in real time

By Dan Digmann

It’s like Laura Vanderkam had me at hello.

Okay, so it actually was the title of her audible original audiobook “How to Be More Intentional with Time” and the fact that it only lasted 33 minutes that stopped me in my tracks. 

Lessons on time management and increased productivity in about the same amount of time it takes to watch a rerun episode of “The Big Bang Theory?” Download this gem for me, audible. I need some strong expert insights to help me with better handling how I fill my days.

I mean, there only are 24 hours in each day, and I have a lot going on with working a full-time job, serving as the primary caregiver for my wife, Jennifer (who is living with secondary progressive MS), as well as staying engaged as a blogger, podcaster, and freelance writer. Oh yeah, and I also need to focus on managing my relapsing-remitting MS. 

Who better to help me in 33 minutes than Laura Vanderkam? She’s a notable writer, speaker, and author of several time-management and productivity books including “Off the Clock: Feel Less Busy While Getting More Done,” and “168 Hours: You Have More Time Than You Think.”

Half-hour-long story short: She offered some great observations to make better use of the time I have – the most memorable is that thinking of our time as 24-hour days limits us. We would be better to think bigger, that we have 168 hours each week to fill with the things we need to accomplish.

Hooray. So smart. I’m going to put this into action right now. Thank you, Laura Vander.

As I enthusiastically shared this newfound nugget with Jennifer, we collectively paused as we realized there was an enormous elephant in the room that I was naively neglecting: MS.

You get what we were thinking, right? It’s as though living with MS and doing anything from the routine to the extraordinary seemingly takes at least twice as long as it used to. The stuff all of us with MS deal with – including side effects such as numbness in our limbs, neurogenic bladders, excessive fatigue, restless legs and cog fog – affects any hopes we have for maximizing and managing our time.

Yet this is why I embraced Laura Vanderkam’s shift to focus more on the 168 hours I have in a week rather than freak out that I have just 24 hours in a day. It totally takes a ton of pressure off me as an employee, husband, caregiver, freelancer, and MS patient. It reminded me that living with MS isn’t so much about managing the time we have, it’s being real about the time that we need. 

In my 21 years living with MS, here are three ways I’ve learned to live in real time with this disease:

1. Prioritize and concentrate on what has to be done today.

It seems there always is something to do, whether it’s going to the grocery store, paying some bills, calling a friend, scheduling a doctor’s appointment, or doing laundry. Lists are terrific for tracking your daily tasks and keeping your head clear of clutter. What I’ve found is just as important as listing what you need to do is specifying when it needs to get done. Without prioritizing my list in the morning, I end up gravitating toward the easier to-dos just so I can cross more items off my list. That’s all well and good until I realize that crossing seven items off my list was fruitless when what I really needed to accomplish was going to the health park to get a blood test before my next disease-modifying therapy infusion next week.

2. Believe in your current moments of awesomeness.

Yes, you are awesome and you are doing the best you can, but it sometimes feels like it’s never enough. It’s as though you’ve lost a step or two – literally and figuratively – since you were diagnosed. Sound familiar? I often have to remind myself that never in my life could I do it all. Why, then, do I unfairly hold myself up to this unattainable standard when I’m living with a chronic disease of the central nervous system? I’ve accepted there are some things I can’t do as well as I used to before MS (such as walk, climb a ladder, and open a jar) while I also recognize there are things I’m better at since I was diagnosed (such as enjoy the splendor of a sunrise, advocate for myself, and listen to and help a person in need). Each moment you’re doing your best for today is your awesomeness in real time.

3. Trust in the promise of tomorrow.       

Two realities every human lives with: there are 24 hours in a day, and some days are better than others. And this is why I took so much from what Laura Vanderkam said in her 33-minute audiobook about focusing more on the 168 hours we each have in a week and being more intentional with the time we have. In living with MS for more than two decades, I’ve come to realize it does me no good to beat myself up over my perceived shortcomings or failures in not accomplishing the daily goals I set for myself. That perpetually is what tomorrow is for. To set new goals or the day, celebrate what I have, and give myself another chance.