What COVID-19 isolation looks like for two people with MS

An extremely anticipated envelope from the Great Lakes Loons sits unopened on our kitchen counter.

It hasn’t moved since Dan brought the mail in more than two weeks ago, and it crushes me to admit that I don’t plan on opening it anytime soon.

Contending with the uncertainties of COVID-19 has that effect on people. Agree?

I mean, I remember how incredibly excited I was in the middle of winter when I ordered a package of tickets to four different baseball games for our beloved Loons, a Class A minor league team for the Los Angeles Dodgers. I couldn’t wait for the summer evenings to sit with Dan on the first base side of Dow Diamond and watch the aspiring major leaguers as we ate hot dogs and peanuts shared an ice cold beer or two.

I fear that tearing open the envelope of tickets would be a bitter reminded of how the current spirit of isolation and social distancing has stripped away our abilities to get out and have fun.

As a person who lives with Secondary-Progressive MS (and whose husband lives with Relapsing-Remitting MS), I understand and am abiding by the instructions for staying at home and self-isolation.

I almost feel selfish writing this. Neither Dan nor I have been diagnosed with COVID-19, thank God, but the pandemic has had a major impact on us. I know, right? Who hasn’t it effected. But it is really front and center right now.

And COVID-19’s impact for us goes way beyond our church shifting to hosting weekly online worship services, our Governor Gretchen Whitmer shutting the state down for three weeks, and our toilet paper supply dwindling down to seven rolls.

Making a careful choice about caregivers

First and foremost, we decided to not have my weekday caregivers Jen and Dru come into our home to help me with activities of daily living while Dan continues to work full time remotely. We arrived at this decision about 12 hours before Gov. Whitmer issued the executive order for Michigan residents to stay home.

It took a lot of thought because we both like and appreciate all that Jen and Dru do to help me. But seeing how quickly this coronavirus can spread and knowing that there’d be no way to uphold the recommenced six feet of social distance between me and my caregivers, we weren’t willing to take any chances with this virus.

This decision puts a lot on me, but it puts even more on Dan as he now truly is my around-the-clock caregiver. He does all of our cooking, cleaning and laundry as well as helping me with elevating my legs, stretching my arms and transferring me in the bathroom. Oh yeah, and he still has a full-time job working as a creative writer.

I said to him, “Are you sure you don’t need the help? That puts all the pressure on you.” But Dan, in his typical reassuring way, replied, “I’ll be fine because the pressure isn’t all on me. It’s on us, and if you’re OK with it, I’m OK. Remember: We’re in this together.”

So we’re moving forward together, as always 🙂

Having no choice about my physical therapists

It’s been nearly four weeks since I’ve seen “my” physical therapy students. Each week since last August, Liz and Ben (two students in Central Michigan University’s Doctor of Physical Therapy Program) have come to my house to help me with a home exercise program. This provides me the physical activity I need, and it gives them hands-on experience working with a person who has MS.

But as CMU students were on their spring break, the university president recognized worldwide and nationwide coronavirus trends and wisely chose to have students not return to campus. The academic year is concluding through online classes.

So smart for everyone involved, but so much for hands-on experiences.

Sure, I stay connected with Liz and Ben over texts and Facebook, but my movement and physical activity levels are beginning to lose some of the momentum these two PT students helped me to develop. Not to brag, but with their encouragement and guidance I was standing in my standing frame for 44 minutes. While Dan continues to help me stretch and exercise, I still miss working out with the awesome duo that is Liz and Ben.

Facing our uncertain new realities

I certainly am not giving MS more credit than it deserves, but I will say that living with this unpredictable disease for 23 years has taught me how to be flexible and live with harsh realities, similar to what we all are dealing with in light of COVID-19. Plus, I am Gen X. Staying at home, socially isolating and sitting on the couch? We’ve got this 😉

And thank goodness for the technology that enables us to stay connected with family and friends during this time of social distancing and self-isolation. Still, it was during a recent FaceTime chat with Dan’s sister, Dawn, her husband, Mike, and their daughter, Elizabeth, that I was reminded of the impact of this virus. They always come out to Michigan for the Walk MS event in May, but all such events are being held virtually this year. Again, thank goodness for technology.

Then there are things that technology can’t help with. Like, Dan and I were going to go back to Iowa this spring for our niece (and my goddaughter) Anna’s First Communion, but we fear that may get rescheduled. Plus, I will need to get my twice-yearly Rituxan infusion in August. I mean, will infusion centers even be ready for patients by then? Such uncertainty.

And these are just the start of the events, moments and day-to-day activities that we will need to rethink in light of the unforeseen coronavirus realities. This is why I think I’ll just wait to open my Great Lakes Loons ticket envelope until the pandemic passes and the world says it’s time to play ball.