Autonomic Dysfunction : Fighting for Balance in Chaos

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The other day I had a conversation about the nature of POTS/Dysautonomia/Autonomic Dysfunction with my doctor. It was really helpful for me, so I wanted to write this post to shed more light on what autonomic dysfunction is if you or someone you love lives with it, because reading posts like this has been helpful for me in my own journey of understanding and taking the best next steps.

The nature of Dysautonomia is one of unique dysfunctions, but in a way I think that’s what makes all struggles relatable, because we’re all navigating our own set of unruly waves, yes? So may you find encouragement here despite the ocean you’re standing in.

Autonomic dysfunction is ultimately a condition of the body constantly veering from equilibrium. It causes the body to not properly regulate automatic systems on its own (things like blood pressure, body temperature, heart rate, adrenal function, sleep cycles, and a lot of other things that a more able-body does by default), so we’re challenged to constantly steer the ship manually.

You know those seasons where you feel exhausted from holding the wheel, but letting go isn’t an option either? It’s not always a matter of surrendering your battle…sometimes it’s a matter of surrendering everything you wish you could be holding onto instead of this wheel.

 
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When escalated symptoms present, I spiral into asking questions like “What changed? What am I doing wrong? How can I fix this? What’s the new variable?” Fighting to find balance in chaos. I scribble notes and research like a mad scientist, sometimes ending in revelation and guidance, but often resulting in a tired grasp and foggy view of how to better control things that aren’t fully in my control. Amen if you can relate.

Because the reality is that autonomic nervous system dysfunction is a bit like a broken control board, constantly creating patterns of under-activity and over-activity rather than equilibrium.
Under-active adrenals, over-active heart rate.
Under-active immune system, over-active fight or flight response. etc.
So we’re challenged to constantly redirect and adapt in order to stay above the waves.

Much like other chronic illnesses and life challenges, it’s like steering a bike with janky handlebars vs steering a brand new Corolla…the views of wildflowers on the path might be the same, you might even get to the same destination, but you no doubt arrive a little beat up, way exhausted, and probably had to stop multiple times on the way to re-inflate the leaky tires.

There isn’t always a black and white reason for shifts, just a siren telling you something needs to be coerced back towards equilibrium. Sometimes days can go relatively well, and other days start with a resting heart rate of 150 and end in crushing fatigue, dizziness, and blurred vision. But we keep steering, because the hope is that eventually as systems are pulled further towards equilibrium, the anchor of the autonomic nervous system itself will latch into place and stay there, keeping all things more anchored.

I can only speak for myself when I give these analogies because the condition is on a huge spectrum, but I hope it’s helpful and hopeful in some way, and gives you a little more grace for your own bicycle…. and maybe even reminds you to strap a basket of flowers onto the handles for the more gloomy days ;)

Maybe you don’t live with a form of autonomic dysfunction, but you’re human so you relate to fighting for balance in chaos…

May you continue to fight the good fight (as my dad says).

Because we are victors of the storm, friend.
So we don’t give up.
We hold the handle bars and manually steer as best we can.

For as long as it takes.
When we’re tired.
When we’re discouraged.
When the tires aren’t even moving.
We don’t let go.
We rest when we need to,
We ride when we can.
We don’t ask “Why me?” we just ask “What now"?…
What now when you’re worn out.
What now when you feel empty.
What now when the ache of loss burns.
We return to surrender.
We strap flowers to our handlebars.
We let ourself cry hard and love hard.
And we wake up each day to fight the good fight,
With grace that isn’t tied to a caveat of “getting better” or “reaching the goal.”
We do it for the sake of Love.

So may you carry onward dear pilgrim,
May you let the light in,
Not to replace the shadows,
But to illuminate every inch of what this space holds,
Because it too is holy ground.

All of my love,

Christina