Dysautonomia Autistic Burnout Hell

When your body collapses into itself

I've been thinking about and working on a long-term Autistic burnout recovery plan for myself for a while.

And, ironically enough, as I've been doing a deep-dive today, I've been messaged by no less than 6 people asking me if I know if a program like this exists (I don't, btw.....I wish I fucking did, though).

In an ideal world, I'd find a cottage or small house somewhere, surrounded by nature, animals, temperatures lower than 75 degrees at all times, and reduced demands, with close proximity to OT, PT, and other providers to help with Dysautonomia.

With the intensity in which I've pushed myself throughout my life, alongside chronic masking fatigue and burnout, I have found myself in a physical illness free fall.

When the nervous system constantly feels like it is under attack, and on high alert, unable to truly regulate and rest, the things that are supposed to happen without effort, energy, or intention, start to go haywire.

Dysautonomia is an umbrella term for when a group of medical conditions caused by a malfunction of the Autonomic Nervous System (ANS) occurs.

The things that your body is supposed to do automatically like:

Regulate your heart rate, blood pressure, digestion, and temperature regulation.

Add in a little MCAS (Mast Cell Activation Syndrome), hEDS (hyper-mobile Ehlers Danlos) and you have a really fun trifecta. Sprinkle in a little PoTS for good measure to make it an even more enjoyable combination.

My body and nervous system thinks that it is constantly under attack, and always on high alert, never truly able to rest, restore, and regulate.

And the fucked up thing is that almost anything can trigger it. Diet, caffeine, perceived stress, lack of sleep, environment, temperature, mildew, moisture, infections like COVID-19, Lyme disease, and more.

When we are chronically masking, and when are nervous systems are perceiving a constant state of threat, the long term ramification and impact can lead to eventual nervous system collapse.

The thing that I struggle with when it comes to making sense of what to do next is that a hard reset is what is necessary. An inventory of everything and anything in your life. From diet to habits, to demands and stress. A lot of these things are outside of our control, which can make this feel unbelievably demoralizing.

At some point, I'll choose to focus on what I can control. But for now, I will fantasize about the perfect long-term program, where I can sensory soothe, and address the long term effects of going 35+ years chronically masking, and then another 4+ years of pushing myself into the depths of Autistic burnout hell.