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.

A Poem for a Pandemic

The geese trust their instinct to fly south every fall.

The flower trusts the sun to return again in spring.

The tree trusts it’s leaves to grow back again each year.

So I can trust that this will end, despite this constant fear.

The cat trusts it’s bowl will be filled.

The bee trusts that each day there will be busy work to do.

The stars trust the moon to glow next to them each night.

So I can trust my body to be strong enough to win this fight.

A lover trusts another with their very heart.

The baby trusts his mother to tuck him in each night.

The fish can trust the ocean and ride the currents that pass through.

So I can trust that this strange nightmare will pass for me too.

The dog trusts that his master will return home at the end of every day.

The earth trusts the sun to hold us in her mighty pull.

A farmer trusts the rain to come and quench his parched field in his time of need.

And the birds trust, that even in the fiercest storms, the branch they built their home on will not bend.

So I can trust that we will come out of this ok, maybe even stronger in the end.

-A

Making Memories

I look forward to the day when I can look back at this and think of it,

no longer in the present tense.

I will dust off these old faded memories, the ones that are so vivid in this moment.

The ones that currently scream into all of my senses, igniting fear and anxiety inside my mind.

Hush. I whisper quietly to my own thoughts as the moon peers through my bedroom curtains.

Its ivory light illuminates my shadowed bedroom.

The bed heaves in rhythm with the dogs breath.

In.

Out.

In.

Out.

His slumber is steady – save for the occasional twitch of his paw.

Somewhere a rabbit dashes just beyond his snarling reach.

He does not fear what is happening in the world outside these walls.

He sleeps.

Oh, to have a peaceful mind.

Untroubled by the present, not haunted by the past, not frightened of the path ahead.

Simply living in this moment. Happy to be sleeping on the bed, by the people that he loves.

So the dog is the teacher tonight, the tables have turned and I am the one learning a trick.

To stop the racing cogs and gears of my mind and allow myself to simply be.

To allow myself this stillness, and allow this time of rest.

Like the dog, we will live each day in this house, catching good memories in jars and lining them up on a shelf to look at when the days grow darker.

And when the nights seem longer, we will wait for the sun together.

We will wait and the sun will come, as it always does.

Peaking through the heavy blanket of night like a cool breeze.

And when it does shine again, we will be there together.

grow

Quickly the earth turns from crisp brown to icy white

A soft blanket of snow settling over her, while she slumbers through the frozen night.

Her bright colors have been tenderly folded away for now,

Trusting in the spring, they’ll return again somehow

 It’s the type of cold that makes even the mighty pine stand still.

An earie kind of quite creeps, painting ice on every window sill.

While her children all keep warm by a fire snuggled close

The crackling flames dance merrily, happy to warm fingers and warm toes.

Time slips by in the shaken up, snow globe world until

the frozen heaps begin to melt, and trickling streams begin to fill.

And the parts of her that all seemed buried deep beneath the icy snow

Start to bloom again and perfectly afresh begin to grow.

-AE

Healing

My healing comes in steady waves.

So inconspicuous it could go unnoticed if one wasn’t aware.

Like the second hand on an old clock

I tick slowly on, in minute and determined movements.

The forward movement is so small it could go unnoticed by the naked eye.

Until you glance away, and back again, and see how far I have already come.

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

Anxiety Lies

I was going a hundred miles down a road that I couldn’t see

I was fearfully and blindly grasping at the straws in front of me

Hoping for a light to shine and illuminate the way

The right choices for me to make and the right words for me to say

When you hit a bump and you’re going that fast it can cause a massive wreck

Standing in the middle of the highway of my mind, I was surrounded by the damage, a haunted feeling creeping up my spine.

My self-confidence was crumpled like the metal of damaged car

A person in a shell of nothing but some bruises and some scars.

Anxiety smacked me in the face like an airbag going off inside my heart

What was meant to keep me safe and well was now slowly tearing me apart.

I was constantly running, inside the dark parts of my mind,

Running from both past and future, terrified of what I might find.

My mind was playing both the roles in an epic game of “cat and mouse:”

What was once a place of comfort quickly darkened into a madhouse.

I was giving all my power to the fears inside my mind

Until the day I took a deep breath, one small step, and left it all behind.

The best part about the fear that can consume you from inside

is once you turn and face it, it always runs away and hides.

It doesn’t matter if you are little or very very large

When fear slips up right behind you, you are the one who is in charge.

Tell your fears you see them, and that everything’s all right.

Tell your worries that it’s all ok, you can focus on just making it through tonight.

You don’t have to face all of your battles in one almighty war.

You can take it day by day, finding peace and joy in small moments that you never saw before.

Anxiety likes to whisper small doubts into our ears.

Small seeds of fear and of incompetence that grow into monstrous fears.

If we focus on the negative, the evil and the sad

We will only see the darkness, not the blessings that we have.

No matter what your mind is telling you, things are going to turn out just fine.

And to truly enjoy the sun you have to endure some cloudy times.

On this journey for peace I have set upon, I have come to realize.

If there’s one thing you can be sure of it’s that anxiety lies.

Learning to Ride the Wave

I have been a bit MIA the past couple of months when it comes to writing. It took me a while to decide that I wanted to share what was going on with me and has taken me even longer to figure out how to put it into words.

If you know me personally or have read any of my other works, you know that anxiety and mental health issues are something I have dealt with ever since I was a young teenager. Over the years I have gone to many therapists, tried many different medications, read many books, done countless meditations, and tried homeopathic remedies to try and “fix” my anxiety. 

After my diagnosis of Multiple Sclerosis about a year ago my anxiety really began to spiral out of control. What once was a small voice of worry in the back of my mind became a deafening roar that echoed violently off of the inside of my skull. Every day I felt like I was at war with my own mind. I was exhausted, I was losing hope, and I was scared.

About a month ago I started an intensive outpatient therapy program (meaning I go to treatment for 7 hours each day but go back home after treatment each evening) to finally address both my PTSD and anxiety. It was a difficult step to take, but one I knew was important for my mental health.

 The treatment I am going through is called Prolonged Exposure Therapy (PE). PE has two parts to it:Imaginal Exposure- revisiting your traumatic event in detail with a therapist, speaking in the present tense, and then discussing and processing the imaginal exposure and your emotions etc. afterwards with the therapist.

The second part is In Vivo exposures. This means “in real life”. These exposures are confronting your fears both during programing and at home after programing each day. You work with your therapist to develop a range of all of your possible feared stimuli or situations (related to PTSD or another disorder, so it could be specific places, people or things that remind you of your trauma and cause panic and anxiety or trigger you in some way) and create a challenging but doable exercise to do repeatedly day after day, until it no longer causes you anxiety.

 This process is called habituation and it is the gradual process of becoming accustomed to safe but uncomfortable situations that we once perceived as scary or dangerous. Once you habituate to a once feared stimuli you move on to the next thing on your fear hierarchy.

I am attending a program that focuses on Prolonged Exposure Therapy as well as Cognitive BehavioralTherapy (CBT), Dialectical Behavior Therapy (DBT), Experiential Therapy(ET) and medication management.

This treatment has been one of the most exhausting, terrifying, empowering, healing, and intense experiences of my life. I am not going to lie and say it’s easy, but I will say it works.

It’s hard. I mean really, really hard, but it is so worth it in the long run. Beginning to free myself from the heavy weights of anxiety and panic that I have been dragging around for so long is so invigorating!

It is both intimidating and self-empowering to wake up every day and face my biggest fears. To look my demons in the eye and tell them to fuck off. To learn to trust and love my own mind again.

I didn’t write for a while as I started this treatment program. Writing is very emotional for me and when I write a lot of my heart pours out onto the pages. I wasn’t ready to write in the beginning of treatment. I just had too many thoughts, fears, anxieties, and emotions to even begin to put them into words, let alone share them with anyone but my therapist.

But then one day I picked up a pen and wrote something that sort of encompasses what I have learned so far from this program and what I am continuing to learn and work on every single day. A Poem entitled : The Wave.

It took a while, but I have finally started to feel like myself again.

For anyone dealing with mental health issues or trauma, I know what you’re feeling. I know how scary, and lonely, and exhausting it can be to fight with your own thoughts every day. I know how far away happiness can feel at times, and I know that it may seem like there is no light at the end of the tunnel.

But this is a gentle reminder that there is.

That you are not alone. That you are strong, even if you feel broken. It’s ok to feel what you are feeling, whatever it may be! Your emotions are valid and none of them are “bad”. Be accepting of your emotions and thoughts, but you don’t have to let them control your actions. You get to do that!

It felt important to share this with you all because too often people find themselves ashamed to admit they are struggling with a mental health issue. Once we start looking, however, we will realize that there are so many people out there who are feeling the same things as you are. Take comfort in knowing that we are all human and we all experience both good and bad in our lives. You are not alone, you are not “sick” and you are not crazy. 

You are grounded. You are loved. And you are enough. 

-A