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

Multiple Sclerosis Meltdown

I had a bit of a meltdown today.

I woke up in a body that did not feel strong.

My eyes open in the morning and my mind is 25 years young.

But my body does not feel like 25.

It feels weak. It feels fatigued. It feels unsteady.

Does everyone ache the way I do? Do they feel it at this age too?

I want to go out and explore the world.

I force myself to walk with my dog. Probably pushed too hard.

And after we both end up sleeping on the couch.

I don’t like feeling like my body is failing me.

I don’t like when the words “It’s not fair.” run across my mind for the millionth time.

It’s scary to know there is something wrong inside, something that no one can see.

Its unsettling to know that my own immune system is the thing hurting me.

I’m anxious for all the tomorrow’s and uncertainty they bring.

I am angry at my frantic mind for pulling me out of the present, out of calm.

Today I feel like 25 trapped in 93.

Today is what my husband and I call a “challenging day”.

It’s not bad, because it’s still my life and that is precious.

So we choose to look at this disease as a challenge.

Something that we can overcome.

I had a bit of a meltdown today.

But having good cry is not something that is wrong.

And although I may feel sick today I know

It’s what is on the inside that makes me MS Strong.

-A

 

Link between childhood trauma and autoimmune diseases?

I have been thinking a lot lately about the link between childhood trauma and stress related disorders (post traumatic stress disorder, obsessive compulsive disorder, etc) and Multiple Sclerosis.

According to numerous studies throughout the years there is significant evidence that persons who experienced childhood trauma or prolonged stress and anxiety as a child were at a remarkably higher risk for autoimmune disease. These studies are ongoing and are still working out exactly how and why this happens in the body.

Those of you who have read my story you will know that I was abused as a teen by an older man who I met through community theater. Luckily, my family fought tooth and nail for years to keep me from completely slipping away into the clutches of this monster, and eventually it paid off. I was able to make the decision to end my “relationship” with him and remove him from my life.

But those years left scars on me emotionally. I was always an anxious child and started treatment for my anxiety and depression at a young age (around 15 or 16). But after the mistreatment and trauma caused by this man my anxiety only got worse.

A few years ago I stared experiencing flashbacks, nightmares, severe levels of anxiety, panic attacks and other unpleasant symptoms. I started seeing a psychiatrist and going to regular therapy. Through this I was diagnosed with PTSD. It was only about three years later that I was diagnosed with Multiple Sclerosis.

It is somewhat amazing to think about what a powerful impact stress and trauma can have on the body, even years later. Not just emotionally, but manifesting itself into physical illnesses, and in some cases, autoimmune diseases.

When I first discovered this information I was MAD. I was mad at the man who abused me for all of those years. He took so many things from me. My childhood, my innocence, my trust, my confidence and independence and so much more. But now, to learn that years later my health is now leaving me too and it could be linked to the trauma he caused me…

But the longer I have sat with this information the more my anger has slowly ebbed away. By no means do I forgive what that man did to me. It is unforgivable and to quote my girl Kesha;

Some things only god can forgive.” – Praying, Kesha

However, I do not harbor as much anger and resentment towards him as I once did. The struggles and the pain that I endured because of him shaped me into the woman who I am today. I learned to be strong and to shape my own opinions, I learned to be true to myself because I am enough, I learned the importance and the constant love of my family, I learned that I will never let anyone control me or push me around ever again.

They were hard lessons and took me years to finally start addressing, but now that I have I have found a peace that can only be described as liberating.

I do not want to live with hate in my life. I do not want to live in the past. I do not want to live resenting someone for their crimes against me. I have a good life. Even with PTSD, Anxiety, and Multiple Sclerosis I would say I have it pretty damn good.

I have a husband who not only loves, cares, and understands me…he is my best friend too. I have a family that is my rock, always there to support me and to lean on. I have a wonderful dog who keeps me on my toes and makes me laugh every day. I have a beautiful home with my own little garden and plants and I get to share it with Sparrow Mom and her family too!

(Brief update on Sparrow Mom. I know ya’ll care A LOT. Since she moved out, her three babes have made the great leap of life and taken wing. I could not be more proud of them. Bravo little birds, bravo. The nest is currently unoccupied, despite my daily real-estate efforts. Not to mention the multiple phone calls and coffee dates I had with a robin that seemed very interested…ANYWAYS I have a new friend in my backyard oasis and his name is Mr. Toad. More on him later.)

So I take this newfound information regarding my past (and how it could still be affecting my body in the present) and I am choosing to look at it not as painful reminder of things that once were, but as a positive sign for the future.

This research means that we are making progress in understanding these very mysterious diseases. And understanding is the first step towards finding a cure or a way to prevent them!

It is also a reminder of how impactful stress can be. We know that stress can trigger a relapse with Multiple Sclerosis. So now, more than ever, it is so very important for me to practice mindfulness, tackle my problems one day at a time, and take time to breathe and just relax!

No matter where you are in your life I encourage you to take a moment today to think of a few things you are grateful for, take a couple of minutes to just let yourself relax and enjoy those things, and take a few calming deep breaths. It’s a good day to let go of a little stress!

-A

 

The Spoon Theory

Most likely if you, or a loved one is living with an autoimmune disease you have heard of the “Spoon Theory”. When I was first diagnosed I came across this theory when I was working to educate myself about Multiple Sclerosis. People living with an autoimmune disease experience high levels of fatigue. Unlike normal tiredness, this fatigue is all-consuming and cannot be warded off with a simple cup of coffee or a quick nap. It is bone aching, lead eyelids, energy sucking exhaustion. When fatigue hits we really don’t have any other option than to rest. It’s not a suggestion from our bodies, it’s a demand.

The spoon theory was created by Christine Miserandino in an essay she wrote in 2003. She used spoons as a physical representation of the amount of energy we have available to us to complete activities in our daily lives.

Imagine that you only had 12 spoons, that’s what people with MS get. 12 spoons to get you through your whole day. Waking up costs you one spoon, showering is two, getting dressed is two, eating is one. That’s half of your spoons gone before you have even walked out the door in the morning!

That is why people living with chronic or autoimmune diseases need to plan their activities carefully. Prioritize things that need to get done for early in the day in case we run out of spoons by 1pm. That is why it makes working full-time hard for many people. That is why sometimes we have to put rest first.

Spoons can be replenished by getting a full night’s sleep. The caveat here is that many people living with autoimmune diseases suffer from sleep issues such as insomnia or pain that keeps them from getting a good night’s sleep. This can cause us to go even further in the hole with our spoons! We can borrow spoons from future days if needed but those spoons will eventually need to be replaced by taking rest days. That is why it is important, I am learning, to make sure I plan a couple of days of “nothing” after any big events or holiday weekends.

So when I say I am low on spoons, now you know I’m not just begging you for free silverware!…but maybe a nap…

-A

MS Strong

I’ll remember that phone call most likely all my life.

The one that stabbed into my heart and stuck there like a knife.

I woke up with no feeling in those fingers and my toes,

With no idea what havoc those small symptoms could expose.

 

You see them in the movies, or hear about them in a song,

Those moments when your ‘normal’ ends and the seconds just drag on.

No one can prepare you for that moment, for that day

When you find out that you’re sick, and it will never go away.

 

I first react in fear and panic, in shock and disbelief

Numbly listening to the doctor, my hands shake, why can’t I breathe?

It’s “indicative of MS”, “ok”, “do you know what that means?”

“No, not really.” My voice shakes, my heart is racing, please help me.

 

Multiple Sclerosis is what the doctor then explained.

All I heard was that it was in my spine and also in my brain.

Something in my body wasn’t right, was really wrong.

It’s funny but looking back, it had been that way so long

 

I held myself together, saying “everything’s alright”,

Until I broke down in the shower later on that night.

My husband sat beside me, as we cried there on the floor,

Knowing that from here on out it’d be so different from before.

 

We were right, and things have changed a lot in half a year.

MS has put some things on hold, like having a career.

It’s hard to work when you cannot stay awake

And the slightest change in weather makes your whole body start to ache.

 

But It hasn’t all been bad, these lessons that I’ve learned.

I’m proud of all my bruises and battle scars I’ve earned.

I’ve grown, and I am learning to live in the moment every day,

To connect to life around me, and let my heart show me the way.

 

I married my best friend on a cold night in late November

A night of love and family that we always will remember.

Those around us showed support and an avalanche of love.

Love is something this disease can never get rid of.

 

I faced some of my hardest nights, have felt so vulnerable, so scared,

But I learned that when you learn to ask, someone always will be there.

Some days I feel my weakest, and some days I feel so strong.

Some days the world feels right and some days everything goes wrong.

 

I will continue on this journey, I will continue on his fight.

I will use the gifts I’m given to spread awareness and shine light.

We’ll find a cure and I’ll keep singing my fight song.

Do you feel as good as I do now?

Because this is MS Strong.