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When I Experience a Dysautonomia Summer Flare-Up

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As I lay on the couch covered in ounces of beaded sweat for the fifth time in a weeks time, I knew what was happening. The great, almighty dysautonomia flare-up during the summer. It feels like you’re freezing and then on fire, and your body responds in kind. The same body that continues to betray you.

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I’ve tried screaming at it, “You have one job!” But silence is my only reply.

I arrive at work. Tired. Haggard.

I feel like staying in bed. I feel like I should rest, but the world awaits. I have to work. It’s part of my duty as a wife and as a mother – even if they would rather my doing something else that benefits my health more. I’m scared that if I am not a participant in this world, I will loose my membership card. My muscles will atrophy and I will die and unfulfilled life.

So I work, and I create. I love art. I love sketching and writing, painting and photography – even though I pay for each activity through my body. Each action has a negative reaction in kind.

So what do I do with this information? With this life and all of its complications?

I could choose to do nothing. I could choose to do everything. I could choose to “fake it till I make it.”

What is the balance? I had to find meaning myself. Through art. Through faith. Through my spirit. It may seem untrue, but your spirit is what holds you. Strength in the body is temporary, but strength of spirit and of the mind can carry you through almost anything. Almost.

Sometimes you will get beaten down. You will hit the pavement and it will burn your skin, but every time you choose to fight back, is another day that you own your illness and it doesn’t own you. Sounds like fluffy crap doesn’t it? I’ve found it to be so true. If I can keep my mind busy, if I can find just one thing that I enjoy, that will bring me life.

There was an interview on the documentary “Unrest” that I watched recently where one patient with chronic fatigue syndrome decided that she could go anywhere in her mind. So what do you do when you just can’t? Ride out the storm? Cry? Scream? Sleep? The answer is in front of us. Yes. You do what you need to, to ride out the crashing waves. Never be ashamed to cry or scream or rest if you need to.

If all you can do is open your eyes, remember somewhere that this is a great feat. You’re here.

Not too long ago, I was desperately ill. I spent six months not being able to consume solids. My adrenals were fatigued and my gallbladder was failing. None of which I knew. I didn’t know that I could’ve died from an Addisonian crisis. Every day, I found something to watch or listen to. I found music and video games. Some days I just slept all day or stared out of an open window and day dreamed. Some days I only had enough energy to let the tears stream down my face. What I didn’t see until some time later was that those were small victories.

I was alive. I was fighting. Even if I didn’t feel like I was doing anything at all. Sounds like crap doesn’t it? Wait until you live it, if you are not living it already. This is what outsiders don’t seem to grasp. We are doing something. We are fighting for our lives. Every day we are here. And some days it will be beyond their comprehension. They (the outsiders) can’t fathom how one day you are well and another day you are lying on the ground curled up in pain. They see you walking and then they see you falling. They see braces and wheelchairs and medication, and then they see that one photo of you eating ice cream with a friend or family member and the assumptions begin and are never-ending. They don’t realize that one photo took you a month to achieve. That you’ve been staring at the blank walls of a hospital, or out of your bedroom window wishing that your flare would pass so that you can step foot outside.

Here’s the thing that no one wants to say, that isn’t going to change. So what do we do then, us chronic illness warriors. Keep on keeping on. Keep on waking up and keep on breathing and keep eating that ice cream when we can and take all of the pictures we want because in the end it is our life, and it is worth living.

Getty Image by JadeThaiCatwalk

Originally published: June 28, 2018
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