Why proactive planning is the key to spontaneity with MG

Note: Shawna Barnes lives with myasthenia gravis (MG) and is a columnist for Myasthenia Gravis News.

Spontaneity and planning don’t typically get lumped into the same sentence. But similarly to how parameters can spark creativity in artistic pursuits, planning helps me embrace spontaneity while trying to live my best life.

In other words, the more proactive I am, the more spontaneous I can be.

That may sound backward, but living with MG since 2011 has taught me that a little preparation creates a lot of freedom. Instead of planning because I’m afraid something will go wrong, I plan so I can say “Yes!” when something goes right.

For example, if friends text and ask if I want to meet for lunch or take a ride into town with them, I don’t want my first thought to be, “I can’t.” I want it to be: “Let me see if today is one of the days I can make it work.”

That mindset starts with knowing how much I actually have to give in the first place. This article contains my MG lifestyle tips for balancing my hunger for life with MG’s demands.

Using spoon theory to prepare for the unknown

One of the many lessons MG has taught me is the value of banking energy. Many people in the chronic illness community are familiar with the spoon theory, created by a lupus patient, Christine Miserandino, which describes energy as a limited resource. Every task costs a spoon, and once the spoons are gone, they’re gone. Instead of waking up asking myself how much I can fit into today’s schedule, I ask how many spoons I’d like to have left in case an unexpected opportunity comes along.

Maybe that means postponing an errand or sitting down for a while instead of pushing through another chore. It could be me saying no to something that isn’t important, so I have enough energy to say yes to something that is. I’ve learned that not every spoon has to be spent just because I have it.

Activity pacing coupled with rest and recovery after activity allows me to get the most out of my days.

What to keep in your car or bag for last-minute invites

One of the ways I keep MG muscle fatigue at bay when out and about is by only carrying my essentials. Your essentials may be different, but these are mine:

• 48 hours’ worth of extra meds, just in case
• cold beverages during hot months
• lightweight layers, including footwear
• appropriate mobility aids, such as a cane, forearm crutches, rollator, or wheelchair
• cell phone, charger, and a wall adapter/plugin

Packing the right gear gets me out the door. Knowing where I’m headed matters just as much.

Vetting destinations quickly for MG accessibility

I’m a digital accessibility specialist by trade, and it bleeds into my home life as well: I recon any new place I go to. My “accessibility audit” is a handful of questions I look up the answers to online or on Google Maps.

Here’s my five-minute accessibility audit before saying yes:

• Is there handicap parking and how far from the main entrance is it?
• Is the environment climate controlled?
• How congested do I expect it to be? Will I be able to independently navigate the space using the required mobility aid?
• If it’s a restaurant, are foods available that are soft in case my bulbar symptoms decide to act up?

It may seem daunting, and even overkill to others, but having the answers to those questions helps me prepare so I can enjoy the entire excursion. Five minutes of research has often meant the difference between being able to stay and enjoy an event for three hours or being forced home early because of a symptom flare.

Think of it like the MG weather app: You’re checking the weather to see if you need sunglasses or an umbrella.

Communicating your buffer zone 

Just as important as planning ahead is helping the people closest to me understand that my limits can change without warning. My friends and family know I may need to leave early or cancel plans at the last minute. They also, thankfully, know that none of it is personal.

Sometimes I’ll send a simple text saying, “I’m planning to come, but I’m running on a low battery today.”

Other times it’s “I’m looking forward to seeing everyone, but I may need to head home early if my body decides to act a fool.”

Setting those expectations ahead of time has taken away so much unnecessary guilt.

The people who care about me aren’t keeping score. They’d much rather spend an hour with me than not see me at all.

Don’t borrow energy from tomorrow

When my symptoms are quiet, it’s tempting to make up for lost time and do everything I can. I want to clean the house, run errands, visit friends, and tackle every project that’s been waiting.

However, experience has taught me that borrowing energy from tomorrow rarely ends well. Leaving a little in reserve often means I recover faster and have a better chance of enjoying whatever comes next.

Planning for chronic illness has never made my world smaller. It has made it bigger. It has allowed me to continue to work, even if it is from home and I run on “Shawna Time.”

MG still gets a vote in how my day unfolds, and there are certainly times when the answer has to be no. Living spontaneously with MG obviously is difficult. But because I’ve prepared ahead of time, it’s no longer always a no. And when it is a no, it doesn’t happen nearly as often as it once did.

The planning isn’t the goal. Rather, the goal is the spontaneous memories that are the result of the plans.