Creating a new normal in life with relapsing-remitting MS

Rochelle waits for a virtual appointment with her doctor in 2020. (Photos courtesy of Rochelle)

Day 25 of 31

This is Rochelle’s story:

I’m writing this on the anniversary of “that day.” I was diagnosed with relapsing-remitting multiple sclerosis, or RRMS, in March 2020. How fitting that I got my diagnosis right at the start of MS Awareness Month and just days before the world went into various stages of lockdown due to COVID-19.

Rochelle says she gets bored easily so she changes her hair every few months. 

As the pandemic progressed, the news was full of headlines describing a “new normal.” Every conversation was about the adjustments we’d have to make as a society and how we’d have to create a new normal — and there I was, wondering what normal now meant for me.

As twisted as it sounds, COVID-19 was a bit of a silver lining for me. I was a workaholic, and working six or seven days a week wasn’t unusual for me. Rest? Didn’t know it. I could easily go from work to dinner to even a club, all in one day. Slow down? Ha! Stop? Never.

But the world came to a stop, and I had to do the same.

Because one day I woke up and couldn’t even put one foot in front of the other without falling. Or I couldn’t form words while speaking or typing (and my work as a consultant is 50% speaking and 30% typing). Or I had to slow down getting dressed because my hands couldn’t do up buttons anymore. I had to stop and ask myself, “OK, what’s next?”

Next was facing reality and acknowledging that my normal would never look the same. I would have to redefine what normal now meant for me and educate everyone in my world.

The first person I had to educate was me.

Rochelle notes she’s not big on smiling in photos.

Now I’m a proudly reformed workaholic who defines a normal workday around my body’s needs. Normal is not eating on the go, but eating better foods at a slower pace. Normal is trying to exercise twice a week (if my body lets me). Normal is adjusting my formerly color-coded calendar, which used to be filled with blocks defining my work and personal lives, so that it’s now balanced with white space, aka time for me.

Normal is giving myself grace. Normal is being patient. Normal is doing therapy to help me understand and continuously redefine what my normal is now.

Normal is recognizing that nothing will ever be the same and that my normal doesn’t look like anyone else’s. It’s making adjustments on an almost daily basis and finding new ways to manage my MS. It’s being a voice and advocating for those who need a new normal themselves.

I welcome my new normal — whatever it may be today.

In recognition of Multiple Sclerosis Awareness Month in March, the MS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us on Facebook, Instagram, and Pinterest for more stories like this, using the hashtag #MSSpotlight, or read the full series.