How My Small World With Multiple Sclerosis Has Become Big Since COVID-19

Ten years ago, my world shrank immensely as symptoms of fatigue prevented me from traveling and participating in professional conferences and events. I was at the peak of my career as a marketing strategist and business owner. Twelve-hour work days were typical. Then, in 2010, I returned from a three-day business trip with a dropped foot, my hand unable to hold a pen, and my lip drooping. All on the left side of my body.

My friends practically dragged me to the emergency room. Normally, a diagnosis like the one I got is a long process of elimination. But in my case, they knew right away. There was no doubt in the neurologist’s mind that it was multiple sclerosis.

After I was treated and recovered from this MS relapse, immense fatigue latched onto me like a lamprey. I realized my life would never be the same. It was heartbreaking and scary. As a business owner, I didn’t qualify for unemployment or disability insurance. I was no longer employable due to the fatigue. Yet I needed to work to support myself.

Over the years that followed, I was extremely motivated to rebuild my life and my business. I started with taking naps daily even on workdays. I allowed myself to wake up at 8 a.m. instead of 6 a.m. Ten p.m. became my new bedtime. Energy management was the most important goal. I aimed to work only three hours a day during the week. After that, brain fog set in. These shorter days ensured I had energy for getting dressed in the morning, making meals, and doing basic household chores like putting the dishes in the dishwasher or sweeping the floor. By taking this approach, I was able to manage my life in and out of the relapses that made the fatigue worse.

It wasn’t easy, but over the years, the relapses happened less often and were less intense. At 49, however, the fatigue ramped up. That’s when I made a bold decision. I moved 99 percent of my client meetings online using Zoom. Good-bye, commuting. Hello, less energy spent!

Still, there was something missing. My life was manageable, but my world felt so much smaller. Before MS, I used to attend all sorts of conferences and personal development workshops that often ran for two or more days. Unfortunately, since MS, I was finding it difficult to manage attending even a one-day event without completely unraveling. Most of all, I missed connecting with my colleagues from across Canada and the USA.

Then, in early spring of this year, another change happened. The World Health Organization announced that COVID-19 had become a pandemic. On March 13, in Montreal, Canada, where I live, the government put social distancing measures in place to protect us. Although it was shocking and worrisome, my life didn’t change much. I was at home most of the time anyway. I continued working remotely and carrying on as usual.

Then suddenly my colleagues and clients were all required to work from home too. My favorite business association decided to put all of their events online, including their fall convention. Virtual is currently the “norm.” Happy dance! I feel like a kid in a candy store. I have so many more ways to connect with colleagues, all from my home office. Who would have thought even six months ago that this would be possible for a homebound person like me?

While the isolation of the COVID-19 lockdown is real and devastating for so many, I have found that going virtual has expanded my world. In the last few months, I’ve been able to make business connections online not just in Canada, but also in the U.S., the U.K., New Zealand and Australia. This is the first time since I was diagnosed with MS and impacted by fatigue that my world has become so big!

For more on the coronavirus, check out the following stories from our community:

• The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19
• If I Get COVID-19 It Might Be Ableism – Not the Virus – That Kills Me
• How America’s COVID-19 Response Is Exposing Systemic Ableism
• I’m Afraid I’ll Be Told to ‘Sacrifice’ My Health for COVID-19 Patients
• Search for COVID-19 Treatment Leads to Chronic Illness Medication Shortages