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What My Life Is Like With Autonomic Dysfunction

Autonomic dysfunction. Those words probably don’t mean much to you. Three years ago they were gibberish to me. Chances are unless you’re a medical professional or a Dysautonomia patient, you probably haven’t given much thought to your autonomic nervous system.

So let’s lay down the basics. Your autonomic nervous system (ANS) controls your body’s automatic functions; all the little things you don’t even have to consciously think about to keep your body functioning. It regulates things like your heart rate, blood pressure, body temperature, digestion, and much more.

Inevitably, when this system fails to work properly you’re going to end up with some serious consequences. Because your ANS controls so many different functions within your body, it can malfunction in many different ways. This is why Dysautonomia is a blanket term for a variety of unique conditions associated with autonomic dysfunction.

What is life like for me with autonomic dysfunction? I’ll try to explain.

When You Pass Out

In the four times I’ve either nearly or fully passed out, I’ve found that there are two ways it tends to happen; either gradually or immediately. When it happens slowly, I can catch it in time and prevent it, but it feels a lot worse because I am fully aware of everything going wrong in my body. When it happens quickly, I have a matter of seconds to recognize it before I lose consciousness, but I’m out before the worst of the symptoms begin. I imagine this has something to do with how quickly my blood pressure drops.

The first scenario is what happened during my tilt test recently, and it reminded me just how terrible that gradual drop is. Your legs feel heavy and tender, your arms cold and tingly. The churning in your head increases as your stomach starts to follow suit. Your chest gets tight and your heart races. Breathing gets a little more difficult. Your body is overwhelmed by a cold sweat that makes you shiver and your hearing starts to get muffled and distant. As your vision starts to go, they finally lay you back down.

Then comes the head rush as your blood floods back into your upper body. Your head pounds with pain, but with each minute your symptoms slowly dissipate. You’re shaky and dizzy, but it feels a million times better than what you were feeling 5 minutes ago. Still, you know you’ll be useless for the rest of the day. It’s time for water, french fries, and Netflix.

Note: this is still a relatively new area for me and many Dysautonomia patients have passed out much more frequently.

On A Flare Day

When I woke up this morning I felt tired and sore as if I had spent yesterday incredibly active. But all I did yesterday was make dinner and write. I look at my phone and see that it’s nearly 11 am. I’m usually up by 8, but I’ve been sleeping a lot lately due to my current flare. There’s a dull ache in my chest and my mind feels fuzzy. I lay in bed for about half an hour, allowing my body to fully wake up. If I get up too soon, it’ll throw off the rest of my day. It’s the perfect time for kitty snuggles.

When I finally do stand up, I take it slow. But even then my vision goes a little dark as my body adjusts to being vertical. It’s back within a few seconds and I make my way to the restroom. Looking down at my feet, I recognize the blood pooling in my legs that makes them appear darker than usual.

I get my breakfast, fill up my bottle of water, and sit down on the couch, already winded from my short excursion. I listen to a sermon online as I eat my food and then dive into Editor-in-Chief duties. No, I haven’t put on pants yet today.

As I sit here writing, my arms are getting a little tingly and I’m a little short of breath. If I don’t focus, my vision gets a little blurry. I can feel that my heart rate is a little high, so I prop up my legs and reach for my bottle of water. Maybe I should have put a little more salt in my oatmeal earlier. Yep, salted oatmeal. Increased salt and fluid intake helps to increase blood volume and, therefore, decrease symptoms.

I’m starting to get uncomfortable with the fact that my hair is greasy and I need a shower, but showering while home alone isn’t the safest option for me. The heat of the water dilates blood vessels and exacerbates my symptoms. Three out of my four fainting/near fainting episodes have happened in the shower. So I wait until my husband gets home, just in case. On a good day, this wouldn’t be as much of a problem; but during a flare, I know better than to attempt a shower alone.

On A Good Day

On a good day, everything feels more stable. I can manage larger tasks like cooking a meal or cleaning a room, as long as I pay attention to how I’m feeling and take breaks as needed. But any major endeavor and I know I’ll be taking energy from tomorrow.

All of my symptoms are still there, but they’re subtle enough to ignore if I want to. If I’m lucky, I might even feel just a little energized when I wake up in the morning. I’ll likely feel like a semi-normal human being for at least a few hours that day and I’ll want to get dressed and go somewhere or clean the house or climb a mountain. That’s when I have to start reigning myself in to keep from overdoing it while still enjoying my good day. Because beneath this home-bound, shower-needing, pale exterior there lies a heavily ambitious girl with crazy dreams.

8 comments

  1. Heidi says:

    Your writing is like the racing thoughts were taken from my frazzled mind and put together so eloquently. Thank you. I have struggled to explain how I have been feeling and I didn’t understand it. I just got diagnosed today, and when I left the office I just kept thinking “I just want to be normal” looks like normal for me is going to be a roller coaster

    • What a compliment! I’m so glad you are finding encouragement in my posts. I remember well the first time my doctor said the word “Dysautonomia” to me and I felt so lost. Hopeful it was the right answer, but still lost. I stopped at a Starbucks on my way home and sat at a table with my phone, researching this new word. I kept having to look at my paperwork to know how to spell it.

      I can say that having answers does make life easier. It gives you a better chance at finding a complete plan for management and recovery and it helps you to understand exactly what’s going on in your body. I pray you find your niche in treatment and are able to truly live your life. <3

  2. Alison says:

    I identify with much of what you’re saying. I work as a pharmacist in a hospital part-time, and my co-workers are well aware of the days when I’m dragging myself through my day. But I can feel bad at home or get paid to feel bad. I have fibromyalgia, and I’ve been having a flare since December. As it progresses, my symptoms intensify and I don’t know how much longer I can do my job. But the Lord has a purpose, and it’s not for me to go around telling others what’s wrong with me. I usually just say I’m fine. I want them to see the Joy of the Lord, not the giant yelling in the valley. Keep laughing! It’s good medicine!
    Withheld

    • Thank you so much for your comment, Alison. I definitely understand the times when we just have to say, “I’m fine!” and leave it at that. Sometimes we just have to push through and do life. But I also think it’s important for us to be able to speak honestly about what we’re going through with some people (not everyone, necessarily); especially those closest to us. The beauty of the Lord’s work in us is that he can be shown in the way that we work through our Giants yelling in the valleys, so even when we get honest and say, “This is what I’m dealing with, but God is good and he’ll help me through.” people can see our testimony.

  3. April says:

    Dysautonoma was recently added to my Hypokalemic Periodic Paralysis Diagnosis. This article accurarely describes my days also. I too am a writer at RedChairMoments.com. Hugs & Hope to you- April

  4. Elaine says:

    I do feel your pain. I have a sense of worthlessness, not good for anyone. I get angry and just want to be left alone. Walk you will feel better, get some exercise, well intended thoughts from others but until you’ve walked in my shoes, you have no idea!

    • Thanks so much for your comment, Elaine! It’s definitely a struggle to filter out the good advice from the bad and find a way to approach life with a healthy mindset, even in a broken body. I just want to say that you’re not worthless and you’re not defined by your limitations. I hope you’ll continue to follow my blog and find some encouragement in it.

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