Multiple Sclerosis – Alix in Wonderland

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.

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

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

Brave

What do you think of when you think the word ‘Brave’?

Do you think of knights or warriors or heroes in capes?

Or do you think of everyday people of all sizes and all shapes?

Brave is waking up each morning, willing to face the challenges of the day.

It is looking your problems in the face, but never backing down.

It is letting a smile sneak through when all your heart can do is frown.

Brave is walking through a valley of fear and doubt and pain.

It is silencing all of the ‘what if’s” smacking around inside your brain.

And somehow calming the restless and anxious soul and letting a racing mind unwind.

Brave is showing up to the doctor’s appointment

Even though you are afraid of what they might find.

It is learning to leave the demons of your past behind.

Brave is taking a deep breath in… and letting it out again.

Brave is admitting when you need help, that you can’t do it on your own.

It is making it through the night when it’s dark and you’re all alone.

Brave is smiling through the tears that are streaming down your face.

And cracking jokes in hospital rooms to ease your loved one’s fear.

Brave is accepting words of help, even when it’s not what you want to hear.

Brave is pulling yourself back up to standing, after you’ve taken your hundredth fall.

It is not beating yourself up for the times you showed your pain.

Brave does not mean that you are not scared, that your heart does not race,

and your hands don’t shake, they do.

Brave is feeling all of the fear and stepping forward anyways.

Brave is one foot in front of the other, one step at a time.

Brave is being patient for the change you need, trusting that the stars will align.

Brave can look at you with fear in her eyes, a quiver in her voice.

Brave can break down and be a monstrous mess

But brave knows that eventually, life will coalesce.

Brave is the woman at the clinic, or the man who limps slowly down the street.

Brave is the family in the waiting room, or the patient in the bed.

Brave is the battles we have won in the past, and the ones that lay ahead.

Brave is falling into bed after a hellish kind of day.

And telling yourself that even though it was so hard, it’s going to be ok.

Braving is reminding yourself that tomorrow is a brand new day.

Brave doesn’t always shock and awe.

Brave can be quite simple and quite small.

And sometimes those little tiny steps are the bravest of them all.

-A

A Perfect Storm

The past two weeks have been rough. Very rough. It’s taken me a while to even work up the courage to write this post.

Two weeks ago I started feeling really crummy. I came down with some sort of stomach bug. It sucked, but it was just a stomach bug, I knew it would end. A few days passed…and then a few more. Before I knew it I had been down and out for a solid week. I woke up that next morning to something that I had never experienced before. My whole body was shaking. It wasn’t just shivering, it was violent, uncontrollable shakes wracking through my entire body. I would later find out that this phenominon is called Rigors.

At first my husband and I thought I was just cold. We cranked up the heat, layered clothes onto me, and piled on the blankets. But the shaking just continued. In fact, it got worse. The next day I emailed my doctor asking for advice. I’ve had chills before when I have had the flu, but never like that. My doctor suggested that I be seen that day.

I went in, got some meds. They did some tests and assured me that I had an infection and with some antibiotics I would be fine. Fast forward two days and I could barely walk anymore. My body was exhausted, I was exhausted, and to be honest, I was scared. Really scared.

I ended up spending the day in ER getting fluids and more tests than I could count. Again, they ruled out everything (this time also ruling out an infection, and advising me to stop taking the antibiotics). My heart rate was high, and I was running fever so the ER doc gave me the option of going home and trying to rest, or being admitted overnight for observation. I chose to go home, and try to get some sleep. I felt like that was what my body was needing the most. Looking back, I wish I had stayed.

Two days later I was back in the ER for more fluids and tests. This time I was put on a drug combination of Reglan and Benadryl. The Reglan to help with nausea, the Benadryl to help counteract the side effects of the Reglan. I was so tired of being sick at this point, that I didn’t even question what these side effects could be.

“Reglan can make you a little restless.” The doctor had said.

Well, it did. But it was manageable for the first day. I felt uncomfortably wired, but the Benadryl took the edge off. But that night I barely slept. I had the worst Insomnia of my life. The next morning it only got worse.

I started feeling incredibly anxious. I didn’t feel like myself at all. I could feel every racing beat of my heart pounding against my ribcage and rattling my entire chest. I couldn’t focus on anything, I couldn’t stop moving. I felt like I was dying.

It turns out I was having a severe adverse reaction to the Reglan. My heart rate continued to run high and my body was going completely haywire. It was worse than anything I have ever felt, including from Steroid Infusion Therapy, which anyone who has had done can tell you is not a ride in the park.

I was scared before, now I was terrified.

I ended up being admitted to the hospital due to the extreme adverse reaction to Reglan. Luckily I was able to go home the next day. It’s been four days since I last took the Reglan (and I only took it for one day) and I am still having waves of extreme anxiety and racing heart, although less frequently and intense each day.

It turns out this is not an unheard of reaction to the drug. Although uncommon, it can cause this type of response in some people. My chart now has Reglan listed under my drug allergies.

These past two weeks are a blur of pain, fear, stress, anxiety and tears. I’m having a hard time moving past these painful memories. I know that it is in the past, and that I will never take that drug again so I will never have that reaction to it again, but I am still scared.

It is hard to admit that I am shaken, that I wasn’t able to just bounce right back like I usually do. It’s not easy to talk about things that caused such pain. And it is definitely not easy to look this kind of anxiety in the face and tell it to fuck off.

But admitting I am scared is nothing to be ashamed of as long I don’t give up. As long as I keep my head up and keep moving forward. As hard as the past two weeks have been, I did make it through.

I proved to myself that my body and my mind are strong. No, they are not perfect. But they can take a few punches and stand up again. I might not stand up gracefully, or quickly but I will stand.

So with shaking hands, but a determined heart I look forward to a new week full of smiles, healing, positivity and growth.

-A

🤧

I have been a terrible blogger the past couple of weeks. As in…I have not blogged.

I have been sick for over a week now with some sort of cold. Before MS a cold was no fun and made me feel like crap, but I feel like after a couple of days I would bounce back and just have a stuffy nose or other minor symptoms. That is NOT the case with this cold. I have been feeling solidly ill for the entire week.

Fellow MS’ers, have you experienced an increase of severity in your cold/flu symptoms since your diagnoses? Other than loading up on meds, what are your tips and tricks for when you are “down and out” due to illness?

I have been meaning to write a blog post every day this week, but I have just been so fatigued I haven’t been able to write much at all, let alone anything to post! I am hoping to bounce back from this sickness soon and I will think of something really special to write about!

I just wanted to check in with all of my friends on the blogosphere and wish you all a happy Monday.

I hope you are all staying warm (for my fellow northerners) and cozy today!

🤒 – A

My MS Star

Last week I had the pleasure of attending my first “Taste of Generosity” silent auction and fundraiser hosted by the National Multiple Sclerosis Society.

This event not only raises money to help work towards finding a cure for Multiple Sclerosis (MS), it also is a chance to honor MS Stars in our community. An MS Star is someone who has made an impact on the MS community in some way.

When I first heard about this event I knew that I had to nominate someone who has been a super nova of a shining star in my life since my diagnosis of Multiple Sclerosis last fall. My husband.

It was a wonderful evening spent with family and folks from all around the twin cities, joined together for one cause; find a cure for Multiple Sclerosis.

Thank you to all of those who continue to support me on my MS journey through your prayers, words of support and love! You all lift me up, more than you know!