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.

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 

The Wave

It feels a thousand years ago

I started on this daunting path

With shaking hands and wild eyes,

Still picking up the broken pieces of the aftermath.

 

What had felt like an impossible feat

Has already begun to come to pass

And the healing that seemed so far away 

Came like a wave crashing over me so fast.

 

Once I accepted where I was 

And stopped trying to control the entire game

I found that were I was, was enough 

And my life was waiting there for me to come reclaim.

 

The part of me that’s hurt is still there

It just doesn’t sting so bad.

I’ve learned to trust myself again,

A self-love I’ve never had. 

 

The fear still creeps up on me

every now and then,

It’s breath hot and sticky

breathing down upon my neck 

 

But instead of curling up to hide 

I look that fear right in the eye, 

And tell it to back right off

Because I get to decide.

 

What is scary, what is dangerous,

What’s worth the adventure and the risk.

That anything life throws at me 

Together my heart and mind can fix.

 

It’s a very scary war to wage,

The one inside your head.

It takes a special kind of brave to speak of your demons

To utter words that long have gone unsaid.

 

Anxiety, OCD, Depression

and so much more.

Just the tip of an iceberg of issues

That the world’s learned to ignore.

 

It’s time we change the stigma, shed a little light.

Mental illness does not make you weak.

It makes you very strong.

And it takes a very brave soul

to ask for help when things go wrong.

 

 

So, the woman who feels hopeless,

Or the man who feels so lost but is afraid to say

Are nothing short of warriors

Donning armor and walking into battle every day.

 

 

So, when you feel the weight crushing down upon your chest,

Remember both the bad and good are but fleeting states at best.

You will learn to cherish every emotion your heart has had and each lesson that life gave,

Once you take a risk to swim and learn to love to ride the wave.

5 Types of Anxiety Disorders

Chances are good that you or someone who you love has experienced some form of clinical anxiety in their lifetime. Anxiety is a completely normal and healthy feeling that all of us feel at one point or another. But having an anxiety disorder is a lot more than just feeling nervous.

I’ve decided to write about five major types of anxiety disorders. Someone with anxiety can have one, two, three or all of them at once! There are more that I will not discuss today, but that does not mean they are not out there!

Just because you have one Anxiety Disorder does not mean that you can’t have another, in fact many of these disorders kind of bleed into the next so it is not uncommon to develop more than one anxiety disorder.

Think of Anxiety Disorders as an umbrella, and all of these different disorders fall under the same umbrella.

Generalized Anxiety Disorder (GAD): Generalized Anxiety is often described as being in a constant state of worry and feeling of doom or dread that something bad is going to happen. However, oftentimes (not always) people with GAD have a hard time pin pointing exactly what it is they are anxious about, it is more of a constant state of general unease.

Obsessive-Compulsive Disorder (OCD): Obsessive-Compulsive Disorder is characterized by  repetitive, unwanted thoughts (the obsessive part) and the need to perform repeated tasks or behaviors (the compulsive part). These compulsions can oftentimes become ritualistic in nature, done to temporarily ease the symptoms of intense anxiety and bring a short period of comfort to the person. The term “OCD” get’s thrown around very casually in our current society.

People love to say “Oh my god, I organized my entire closet by color. I am SO OCD!”  or “You like to clean your house every other day? You must be OCD!”

The truth is statements like that stigmatize and romanticize OCD. A disorder that is anything but “cute” and “funny”. Only those truly fighting the heavy shackles of  Obsessive-Compulsive Disorder know how serious and horrible this disorder really can be. Anyone who truly has OCD would never make an offhanded comment or joke about it.

OCD is not organizing your pens by shade, or sweeping your house every day. OCD is having to get up ten times an hour to check that the oven is off, so that you don’t burn down your house and kill your entire family. Or the guy whose hands are red and raw because he has washed them 37 time already today, but still has to open doors with his sleeves covering his hands. OCD is being completely aware that your thoughts and actions are irrational and not actually helpful to your anxiety, but you have.to.do.it.anyways.

Panic Disorder: Panic disorder is defined as someone who has had (is having) multiple unexpected or repeating episodes of severe anxiety accompanied by; feeling of doom or dread, intense fear of dying, heart palpitations, shortness of breath, shaking, sweating, fear of “going crazy”, nausea, dizziness, numbness and a general feeling that something horrible is going to happen.

Panic attacks are very scary, anyone who has had one (and most people do, unfortunately, at some point of their lives) knows that in the moment it can feel like a near impossible task to overcome the feeling. When people who are having a panic attack say they feel like they are dying, or about to pass out it’s because they truly feel that way.

When repeated panic attacks occur panic disorder can continue to intensify to the point of Agoraphobia. Agoraphobia is defined as:

“A fear of having a panic attack in a situation where it would be challenging or embarrassing to escape. This fear often leads to persistent avoidance behaviors, in which the person begins to stay away from places and situations in which they fear panic may occur. For example, some commonly avoided circumstances include driving a car, leaving the comfort of home, shopping in a mall, traveling by airplane, or simply being in a crowded area.”

Post Traumatic Stress Disorder (PTSD): PTSD is an anxiety disorder that develops when someone experiences a shocking, dangerous, scary or terrifying event. Oftentimes people associate PTSD with soldiers and those who have seen combat. This is a very common and serious cause of PTSD, but not the only one.

PTSD can be caused by things like sexual assault, a car accident, witnessing or being the victim of violence or crime and more. Most people will experience trauma in their lives and recover from it in a healthy way over time. When healthy recovery does not happen PTSD can develop. PTSD is characterized by having all of the following symptoms at least once a month after your trauma:

• Revisiting the Trauma – this could be through intrusive thoughts, flashbacks and nightmares.
• Avoidance Behaviors – this could be avoiding the actual place of trauma, memories or talking about the trauma, or even things that remind the person of trauma.
• Aroused Reactivity – Being easily startled or always on edge, difficulty sleeping, and irritability or angry outbursts.
• Cognition Symptoms – Loss of interest in pleasurable activities, feelings of guilt or depression, distorted thoughts, trouble remembering details about the event or trauma (blacked out memories)

 

Social Phobia (previously known as social anxiety): Social Phobia is an intense fear and sense of self-consciousness in social settings. The intensity of social anxiety can vary from person to person. One person with Social Phobia may be fine in a social setting, as long as they don’t have to speak in front of the group. Another person diagnosed with Social Phobia may have issues even leaving their house due to the overwhelming fear of interacting with others.

The good news is that all of these anxiety disorders are treatable with the use of therapy and medication management. Many times anxiety disorders will require both to be fully and effectively treated.

Cognitive Behavioral Therapy (CBT) is one of the most widely proven treatment options of Anxiety Disorders. When participating in CBT you work with a licensed therapist to identify, address, and change distorted and destructive thinking and behaviors. You work to improve emotional regulation and develop, with your therapist, healthy coping techniques to use throughout your life, because unfortunately you cannot cure anxiety, but you CAN learn to control it!

I hope that this information helped you better understand that when someone tells you they have an Anxiety Disorder they aren’t telling you they are simply feeling nervous or anxious. There is so much more that they are dealing with under the surface.

If you or a loved one has one of these disorders I encourage you to educate yourself (using a reputable source, of course) on the anxiety disorder further. Education is power!

Be patient and kind with one another, you never know what demons someone may be fighting.

And for the warriors currently in their own battles with an Anxiety Disorder, you are STRONG. You are NOT ALONE. And things WILL GET BETTER. Keep fighting warriors!

-A