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.

The Fall

Sometimes I forget that I am sick

My days fly by in flashes of orange and pink

I feel good, I forget that I have limits and I forget what is inside of me

I just feel normal.

And then I fall.

Walking down the stairs like I have done one thousand times before.

To a twenty-five-year-old the hand rail seems more like decoration than necessity.

Until my feet fall out from under me and my stomach drops

It seems to hit the ground long before my body does.

My phone goes flying across the room as my hands forget their previous task and grasp frantically at the underappreciated railing.

Water soaks into the carpet, and the dropped glass winks at me from the top of the stairs where we both fell, daring me to smile through the pain.

Sometimes, I forget that I am sick.

I don’t remember that my body cannot do some of the things it used to

My back hurts from the fall last week and my arms are speckled with bruises like an overripe pear.

I don’t forget to use the hand rails anymore.

When I look in the mirror, I see the same girl I’ve always known

I don’t see the lesions and I don’t see the pain.

Invisible Illness. That’s the name of my game.

The dark circles under my eyes

and constellation of bruises are all I have of physical proof.

I learn new things like to hold on tight when I am going down the stairs,

to rest when I am weak, and to cherish when I am not.

I remember to go slowly; my body can’t always keep up with what my brain has in mind.

I learn to laugh at the falls, and to not worry about the mistakes that I make.

Sometimes I forget that I am sick, but I never forget that I am strong.

-A