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

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.

We clean up pretty nice! 

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!

My amazing MS fundraiser T-Shirt quilt we won at the silent auction. Talk about wrapping myself up in comfort! Mac likes it too…

 

Traveling with MS and Anxiety, Part 1: Leaving the House

As I am sitting here writing this at 4am it is currently the FIRST morning of the FIRST vacation I have gone on since my diagnosis of Multiple Sclerosis.

The day before we left I was terrified. I had 2 major manic attacks that day, one of them lasting over 3 hours until I finally passed out for the night. I was quite literally shaking in fear. My husband sat with me patiently, listening to me rattle off every possible thing that could go wrong on the trip and how it would most certainly lead to my death. He held my hands to keep me from digging my nails into my skin so deep that I bled. He counted slowly with me to make sure I kept breathing. He is my superman.

I used to be great at traveling. I moved to Chicago, by myself, when I was only 18. I used to dream of traveling the world and seeing every inch of it! I used to fly back to Minnesota to visit my family and didn’t think twice about getting on an airplane.

I am not sure when that all changed. I think it was about 3-4 years ago, around the time my anxiety became very intense and I was diagnosed with Panic Attack Disorder and PTSD.

Now, even thinking about getting on a plane leaves me scrambling for the bathroom with nausea. Now, staying overnight in unfamiliar places can trigger a panic attack before I even get there. Now, I have to take oodles of medication just to relax enough to be able to go to the place that I am SUPPOSED TO BE RELAXING AT!

Multiple Sclerosis added a whole other level of anxiety to traveling. There are so many “what if’s” and unpredictability when it comes to MS. You can go to bed fine one night and wake up the next morning unable to feel your entire left side, or see, or speak. The thought of having a major attack when I am far away from home, my doctors, and the familiarity of my routine is extremely scary for me. What if something happens to my meds.

I’m going to have to give myself my shots ‘on the go’ for the first time. Woohoo, nothing like injecting yourself with disease modifying drugs and flaunting all of your injection sites in that hot new bikini you bought!

Two nights ago, I did not think I would make it on this trip. Hell, I didn’t even think I would make it out to the car. Even though the massive panic attack was telling me that:

“It’s not safe, it’s an Island for God’s sake!”

or

“You’ll get sick, you’ll be miserable, you won’t have the things you have at home to help you feel better”

or

“You are going to freak out. You won’t be able to sleep there at all. You’ll get so stressed out you’ll give yourself a relapse”

All of those things kept swirling through my head like a corndog in a nauseated kid’s stomach on a roller coaster.

I thought about canceling. But I didn’t.

I told myself that this disease and this anxiety has taken so much from me already. It can’t control my life. I WANT to see this beautiful island and waterfalls! I want to go on this trip!!! So, I mustered up all the courage that I could, packed my bags and we made it here!

I am so happy that I looked a scary thing in the eye and told it to fuck off. I am still having a little bit of anxiety, of course. But it is not stopping me from enjoying this time with my family.

This morning I am going to sit and watch the sunrise on a beautiful island, breathe in fresh air, connect with nature and most of all be grateful. Be grateful that I can still go on trips like this. Grateful that I can conquer some of my fears, one step at a time. Grateful that my family loves me and supports me the way they do. Grateful I found a husband who will always have my back and be my shoulder to cry on, bicep to snuggle, and hand to hold. Grateful for this new day. Grateful for this beautiful life.

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

 

New Grill, New Attitude

Big developments in our household this weekend as my husband and I welcomed a brand new baby grill to the family! She is roughly 75 lbs (give or take a few), 61″ long and has a beautiful stainless steel completion.

The proud father of a baby grill (the husband) & Sir Mac N Cheese (the dog)

After a grueling day in the sun my husband finally got the new grill all set up today! We have been looking forward to being able to grill out since we bought our house last fall! So of course we couldn’t wait a moment longer and decided to grill up some sausage and shrimp to have with some red beans and rice tonight!

One of our favorite gluten-free, dairy free “quick” recipes is cooking up a protein of our choice (usually shrimp and some sort of smoked sausage or chicken) and mixing it with some seasoned rice and beans. Delicious, filling and low effort! Those are three things that I often require by the time dinner rolls around.

With MS my energy levels definitely suffer. I need a lot more sleep than the average person. I also have sudden and sometimes severe issues if I push myself too hard and stay up too late/don’t get enough sleep. I have learned not to be ashamed of the fact that I am an adult woman who needs a nap every day. It’s just part of my “new normal”. I need to listen to my body and when it is tired, or hot, or dehydrated or hungry I need to make it a priority to give my body what it is asking for. Which is easier said than done.

Think about all of the times you skipped breakfast because you were running late to work, or stayed up until 2am binge watching Netflix when you know you need to be at an appointment at 9am the next day? How about when you look back at your day and realize that you have barely drank 3 glasses of water let alone the 8+ our bodies need to function fully!

It’s so easy to ignore what our bodies are telling us and put them second to our busy lives, jobs and desires! But we have to remember to thank our bodies and treat them nicely! We only have the one, so be kind to it! Eat those veggies, drink the glass of water and take that nap!

I am noticing that my anxiety levels have gone down quite a bit over the past month or so. It could be a new medication that I started (CBD) that is thought to help with PTSD and the anxiety that comes along with it. It could also be that summer is in full swing so I am getting out of the house more and soaking up a lot of vitamin D! It could be that I am making some progress in my efforts to practice mindfulness and meditation. Personally, I think it is all of them combined!

As much as this diagnosis of Multiple Sclerosis rocked mine and my husbands world, it does feel like the ground is starting to stop shaking. We are learning our new normal and discovering each day the little changes and things that we can do to make our hurdles a little smaller and our daily lives a little more joyful!

We spent the weekend getting some things done around the house (such as giving birth…I mean assembling our new grill), running errands, and enjoying some much-needed relaxation time together.

I learned how to the mow the lawn. I am mildly afraid of the lawn mower and the power that it wields, but I am wildly proud of the finely manicured lawn I produced all on my own!

(minor assistance from husband was required)

So as I sit here as my husband grills up some shrimp, my dog patrols the boarders of our lawn and I gaze out admiring my finely mowed grass I am again touched with gratitude. Gratitude for this lovely little life I call my own! I hope you all have something that tonight you can be grateful for as well!

-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

Moments of Silence

Moments of silence, moments of peace

I live for them as they recharge

My internal battery that always seems to be running on empty

Another thing I can chalk up to my disease.

 

Life can seem so hectic, even when you’re standing still

The moments become memories right before your eyes

It doesn’t matter if you’re moving too

Even if you cannot move the world certainly will.

 

My hands smell like a hospital or a clinic room at best

Sterile and clean in a way that bites my nose

And there are bruises on my arms

And the rest of me is waiting for the results of all those tests.

 

“Please make a fist, now I’ll just find a real good vein”

I’m a pro at this, I think, I’ve done it a thousand times

But I still look away from the needle, and don’t look right at the blood

It seems the only thing I’m really used to is the pain.

 

The blood is gone, the tests are done, and the pee is in a cup

Now I wait here wondering if I’ll get a phone call like before

One that changes life forever, or shocks me through and through

One that makes my blood run cold or tells me time is up.

 

But as I sit here on the deck, my dog sleeping on my feet

The sun shines down on both of us warming up our souls

I smile and enjoy this moment, and appreciate my life

Because these bruises are my armor against any fate I meet.

 

All the pain in life has lessons, if you look just close enough

All your suffering will make you brave and strong

So, do not let your heart grow heavy, and never think that you are weak

For the times that were so hard on you have made you really tough.

 

A day in my body, one that is tired and autoimmune, will teach you many things

It will teach you to stand strong, when the foulest winds will blow

It will teach that you have courage that you never knew before

It will teach you to see the joy and the beauty that life will bring

And most of all it will teach that you can fight

and you can get through anything.

-A

Exhausted is an Understatement

I am emotionally and physically exhausted. This past month has been hard. Between starting injections, fighting off a relapse (or whatever this is), trying to manage pain, working through anxiety issues, death in the family and the political unrest and instability that our sentient Cheeto of a president is encouraging… let’s just say it has been a rough month or so.

I wasn’t going to write a post today because I was feeling so down. I had a bad injection this morning that caused some swelling and much more discomfort than usual.

Swelling from injection 😦

Mom, don’t worry, I sent a pic to my doctor and he said it was most likely just not injected deep enough! But if it happens again we may need to rethink Glartiramer Acetate…I feel like when I have a bad injection day it just kind of starts my day off shitty.

I’m not a betting gal, but I would put money down that anyone who has to stab themselves and inject a foreign substance into their body for their immune system to attack would probably describe the experience using a similar vernacular.

I’ve been extremely fatigued this past week or so. I didn’t think my fatigue could increase more from where it was at, but my body never ceases to prove me wrong. I feel down about myself because I have been so weak, and so tired. I have a pretty strong sense of self, but I can’t help but feel bad about myself when all I can do is sleep 15 hours a day and still need at least one nap to keep me going for the few hours I am awake.

It’s frustrating to watch my life pass by and to be too tired, or sick, or anxious to be able to actively participate in it.

I didn’t want to write this post because I try to be positive and I knew I didn’t have much positivity in me today. But then I talked to my therapist and she reminded me that this is my truth. People need to know that not every day is full of positivity and success and joy. Some days are hard. Some days you cry. Some days you hurt. And that is ok. That is human.

I know I am a strong woman. I wouldn’t be able to fight this fight if I wasn’t, but that doesn’t mean that I am not allowed to have my weak moments. No matter how strong we are, we all have days that knock us to our knees. What matters most is that we get back up again. It’s ok if we stay down on our knees for a little while, it’s ok to be sad and frustrated sometimes. I know that things will get better.

I hope that wherever you are on your journey today that you are able to find strength and remember that even at the end of the longest and darkest of nights the sun will always rise in the morning.

-A

Dear MS…

Dear Multiple Sclerosis,

We’ve been seeing each other for quite a few months now, but I know it is just the beginning of our relationship. When we first met I didn’t know much about you. I had heard your name before but never really given you much thought. But then you showed up one morning and changed my life forever.

You brought with you some of your not so pleasant friends. You know the ones I am talking about…numbness, tingling, lesions, burning, dizziness, and fatigue to name a few. You introduced me to steroid infusions, injections and MRI’s. I can’t say I’m a huge fan of those guys either.

You scared me more than I have ever been frightened before. You make me feel weak. You make me feel sick. You make me feel isolated and anxious. You took away my trust in my body.

You’ve been a tough pill to swallow. I’ve hated you, been bruised for you, and miss out on fun things for you, when you demanded it.

But I have not given in to you. I won’t ever stop fighting you. You may be a part of me now, but you are not what makes me me. 

Despite your efforts, I have stood back up each time you’ve knocked me down. I have learned that I am stronger than I ever knew I was. You have taught me take my body seriously. To listen when it’s signaling to me that something is off. To focus on the positive more than the negative.

I have learned that even on my sickest days, I have people around me who will support and care for me. That I am never alone. I have learned that the power of love will shine bright enough to light up even the darkest of nights and frighten away even the most ghoulish of nightmares. I have learned to be courageous, even when I don’t want to be.

I have learned to take things a little slower and enjoy each minute. To stop and appreciate the everyday things and the beauty all around me. I have learned to love more fiercely, to be more quick to forgiveness and slow to anger. I have gained a compassion for life and the miracle that it is!

So in the end…I cannot hate you. For what use would that be? I’ve chosen to grow, rather than sit still. I’ve chosen to be inspired, rather than be afraid. I have chosen to fight. My life is still my life.

Sincerely,

Mrs. MS Strong