Living With MS during the Coronapocalypse

I was recently asked to share my thoughts on the current pandemic, as someone who lives with an underlying chronic illness. A contact at the National MS Society is working on a story regarding the Covid-19 outbreak and how it has changed daily life and how some things have stayed the same. This is what I shared with her.

I have been watching the development of the Covid-19 outbreak since it started becoming prevalent in China. My god-mother lives in China with her husband and children, so was a bit anxious about it from the very beginning. As the virus continued to spread, rapidly, my anxiety grew stronger and stronger as my husband and I had our honeymoon planned for mid-March.

The week we were supposed to leave for our honeymoon I made an appointment with my Neuro to talk about the potential risks of the virus and my MS and the DMT that I am taking. Before we even went the appointment my husband and I ended up deciding to cancel our honeymoon. We figured that even if I wasn’t at higher risk for complications for the virus, ANY virus has the potential to wreak havoc in a body with MS. We didn’t want to be thinking about that during the honeymoon, so we canceled everything! Boy, am I glad we did? Later that week much of the United states had gone into “Stay at Home” orders! Not to mention the virus really began to spread here in the States around that time, as well.

So, things are different now in the sense that a lot of big things have changed. Things like canceling our honeymoon, my husband transitioning to working from home full time, and isolating ourselves from family and friends. But some things feel very familiar to me in the current health crisis.

I think in a way, I am having an easier time with this than some of my loved ones who do not live with a chronic illness. After I got sick with MS, I learned how to entertain myself at home, I learned to rest and be still in a very busy world, I learned to spend extended periods in self isolation (or close to it, just seeing my husband who I live with) for the betterment of my health! All of those things are familiar to me.

It’s very hard to watch the rest of the world experience the grieving process that I experienced three years ago when I was diagnosed. I remember so vividly the sharp pain of the loss of “normal” and the long road to accepting “the new normal”. We are all experiencing this loss of normal (as well as the loss of so much more, including lives), collectively as a world right now. It’s difficult but I think the biggest thing I have learned is to remind myself that all of this is temporary.

This suffering, fear and loss is temporary. Just as all experiences in life are. There is a Dialectical Behavioral Therapy (DBT) technique called Riding the Wave. (If you suffer from anxiety I highly suggest looking up the full information on this and giving it a read!)

“Experience your emotion as a wave, coming and going. Do not try to get rid of emotion. Don’t push it away. Try not to block emotion. Try not to suppress emotion. Don’t try to keep emotion around. Don’t hold on to it. Don’t amplify it.”

The previous words have helped me a lot to manage my anxiety during this time. Anxiety right now is normal. In fact, a little anxiety is good as it encourages us to take preparative action (washing hands, staying home, following cdc guidelines). It’s about finding the balance between allowing those unpleasant emotions like fear and anxiety but not allowing them to take over my whole self!

Obviously, I am still anxious about the virus itself. But I find that I am more anxious for my loved ones than myself. I know that even with my MS my body is young, and relatively strong, and my lungs are health so I probably would be ok if I got sick. What keeps me up at night is all of those who will not win this battle. Those who are already fighting for their lives, and now have to face the monster of Covid-19 on top of it.

I pray that they find strength and peace. I pray that the minds in charge of finding a treatment or vaccine think clearly and wisely. I pray that the people in charge of making decisions for our country see clearly and are not blinded by greed and fear. I pray that all of us are filled with patience and compassion for one another during this universal trauma we endure together.

Stay strong, stay inside and stay healthy.

While We Stay Inside

We took for granted many things.

Some we thought we’d never miss.

But now they’re gone, it all feels wrong.

And so, we’ll stay inside.

A cold beer in the driveway with a few neighbors, around the time the sky starts to get dark.

Our children’s t-ball games on weeknights in the park,

Sitting shoulder to shoulder with a stranger, on a bus, that smells like pee.

Fully stocked shelves in stores, where everyone can find the things they need.

We took for granted many things.

Some we thought we’d never miss.

But now they’re gone, it all feels wrong.

And so, we’ll stay inside.

Full pews at church, smiles at the grocery store

and potluck dinners that never end.

Long lines in coffee shops.

Afternoon playdates with best friends.

We took for granted many things.

Some we thought we’d never miss.

But now they’re gone, it all feels wrong.

And so, we’ll stay inside.

Bumping shoulders at the farmers market, with early morning smiles that say “hello”

The neighbor kids’ laughter drifting through an open kitchen window

The roar of the crowd as the buzzer blares and the ball goes through the net!

When my hands smelt of lotion, gluten free flour and dirt from freshly planted flowers

Instead of hand sanitizer, soap and anxiety sweat.

We took for granted many things.

Some we thought we’d never miss.

But now they’re gone, it all feels wrong.

And so, we’ll stay inside.

Traffic jams and crowded, stuffy rooms full of friends on the weekend.

Awkward chatting with strangers at the dog park while our dogs become best friends.

School kids in hallways, lined up in single file.

Campfires on a buggy night with friends you haven’t seen in a while.

We took for granted so many things.

And now they’re all racing through my mind.

So, god, please grant us all the patience and faith

To wait this out inside.