My POTS and NCS Story

 

Writing helps me sort out my feelings and gain perspective. My heart has been acting up a little extra lately and with pain comes inspiration and courage to share my story. Before I begin I want to say that my heart conditions are chump change against some things that others struggle with. I by no means mean this post for attention or to make it seem like "poor me, my life is so hard." Cause that's not the truth. This is just one snippet of another part of my story that I've decided to share.

I look like a normal, healthy, 23 year old, but unfortunately that’s not the whole truth, thanks to my somewhat invisible illnesses Postural Orthostatic Tachycardia Syndrome (POTS) and Neurocardiogenic Syncope (NCS), whew! Talk about a mouth full.

I haven’t talked much about my conditions to many people other than my husband, family, and my closest friends. It’s always been an embarrassing reality for me to own. Since my conditions have been worsening little by little, it's become an unavoidable conversation for me and one that I am trying to push myself to be more open about and less embarrassed about.

Since I started experiencing the symptoms from these conditions back in middle school, I’ve always felt that I must just be weak, like if I just push through the pain then I’d be fine and be able to do everything that everyone else can. After years of fighting my conditions I feel like I am finally starting the process of actually embracing them and seeing them for the blessings they are.

 I’ve always been strong-willed, strong-headed, strong-everything when it came to challenges. So in my mind, this was just a challenge, an obstacle that God gave me to overcome. Through this journey I have learned that it’s not. While it’s a challenge, yes, more than anything it’s a lesson. An ongoing lesson and journey to push me to rely solely on Christ and rebel from this “strong independent woman” mentality that I’ve almost prided myself on.

I was in sports throughout my childhood. I was and still am extremely competitive. I loved the rush I would get from dribbling down the basketball court and running down the soccer field. I played sports, I danced, and I Ice skated. I was always active and I loved it. I loved it all.

When I hit Middle school I slowed down majorly. I had my first episode on a field trip. Talk about embarrassing. In the next few years, I had a few more episodes. My symptoms worsened and my parents took me from doctor to doctor trying to get some answers.

In 2014, I went to a new cardiologist who ordered a variety of tests including the tilt table test which is basically a torture chamber for anyone with POTS and NCS. Two minutes into the test and I had tears rolling down my face and I was begging them to put the test to a stop. My heart rate and blood pressure were going bonkers, I was sweating profusely, white as a sheet, and three minutes in, I was out like a light. I was diagnosed with POTS and NCS.

My conditions do alter the way I live my life, but they’ve also shown me the best way TO live my life.

POTS and NCS are two forms of dysautonomia. Simply put, POTS is a form of orthostatic intolerance that makes you sick particularly when you stand up and NCS is basically fancy terminology for having fainting episodes. They sort of walk hand in hand unfortunately, one worsening the other. Due to the fact that POTS was discovered in 1993 there's very little known about it and consequently no fix to its life altering symptoms and episodes, only band aids.

Even when typing this post, I’ve felt dramatic trying to explain what it’s like to live with my conditions. Every day is different. I have good days, bad days, and worse days. Even on the good days, I feel nauseous and lightheaded just getting out of bed. Taking a shower spikes my heart rate through the roof and gives me a whole new meaning to lightheadedness. Blow-drying my hair, doing my makeup, or really doing anything in efforts to looking the least bit presentable leaves me a hot, sweaty, shaky, lightheaded, nauseous mess who wants nothing more than to be laying on a freezing cold slab of tile just to make the room stop spinning, make my face stop burning, and my hands stop shaking. The heat is another trigger for me, which living in Arizona is completely unavoidable. I’m sure people see me as super charismatic in church as I have to constantly keep moving my legs so I don’t pass out while singing ha ha. Standing in lines is really my worst nightmare. It’s a lonely and scary feeling trying to find something to lean up against or somewhere I can sit down without having a million people come up and ask if I’m okay, which while it is nice, it is, you guessed it, embarrassing. Working can be difficult. Walking to the lounge and back to my desk leaves me winded and using the elevator exasperates my dizziness. I have a foot stool under my desk where I rest my legs so the blood doesn’t pool and leave my feet as giant sausages. Moving really at all leaves me trying everything to catch my breath and don’t get me started about if I have to take the stairs. Thankfully, my company has a “nap room” which I take advantage of at 3 pm promptly most days out of genuine exhaustion. With all of this going on inside me, most often than not, you wouldn't know any of it by looking at me.

That's day to day with POTS and NCS. Now let's talk about what goes on during an actual fainting episode. Imagine your heart going faster than you can think. Imagine you are sweating profusely while being absolutely freezing. The room you're in is spinning and all you want is to be horizontal. Imagine you lose your hearing, all but a faint (no pun intended) ringing in your ears. Then you start seeing gazillions of dots and then all of your vision goes; it all goes completely black. Then you’re out. Then you wake up. You don’t know what happened, where you are, how long you were out for. You’re still shaking. You’re still freezing. Your heart is beating super slow and then spikes and your chest tightens. Your teeth feel like they’re falling out and your legs feel like they’re not even apart of you. You’re scared and more than anything absolutely exhausted. This is what an episode looks like. This is what POTS looks like.  

My conditions do alter the way I live my life, but they’ve also shown me the best way TO live my life. I’ve always been independent, I like being able to do things on my own, and I get a kick out of setting a huge goal for myself and then hitting it.

God made me that way, but He also made me with these conditions which I can’t conquer no matter how hard I try. He’s given me these conditions that the harder I try, the more defeated I feel and I don’t think He did that by accident. I’ve fought these conditions and to be completely honest I’ll probably continue fighting these conditions thanks to the human part of me. But when I do rely on Him completely, when I stop pushing myself past the point I should, that is where I experience His peace. I experience the epiphany moment over and over. I get why I have these conditions and I do see them as blessings. I’m closer to Him because of them and they’re sort of the kick in the butt I need to just chill and let Him hold me.

I don’t know how many times I’ve said this in previous posts and meant it, but this definitely takes the cake for the most vulnerable post I’ve written so far. It’s something extremely personal and something that makes me feel like a huge drama queen. I wrote this for a few reasons, but one big reason is so that someone who may be like me and feel guilty and dramatic by telling someone when they don’t feel well, will stop being silent. As I’ve been increasingly feeling worse and as my episodes happen more often and more violently, that conversation is becoming impossible not to have on a daily basis.  I STILL struggle being completely honest with my husband on how I feel every day. I feel like a broken record. Like “guess what? I still don’t feel well! Surprise!". 

“And He said, “My presence shall go with you, and I will give you rest.” -Exodus 33:14

 I will remind myself  that I’m NOT complaining, but I’m taking care of the body that God gave me. I will remind myself that being vocal about what my body needs and when it needs it is not selfish or dramatic or needy; it's just life. I will remind myself that opting out of company events or sitting out on a game of putt putt doesn’t make me weak, but it makes me strong. I will remind myself that this is only my story. It does not define me and I am not dramatic in sharing my reality in hopes that someone who is going through what I’m going through could feel a little less lonely and a little more encouraged to be open and honest about how they’re feeling at every moment of the day. 

 

Final note: writing this post has been more healing for me than I can even begin to explain. If you have a chronic illness and feel embarrassed and needy, don’t. Be proud of yourself and thank the Lord that He gave you a reminder to trust and rely on Him and only Him.