My entire body is in overdrive right now. The other day I talked about Mast Cell Activation flaring up. Today I want to talk about dysautonomia and how it affects everything I do.

Dysautonomia is an umbrella term for numerous conditions causing the disfunction of the autonomic nervous system (ANS). If you’ve had POTS or long covid, some of these may sound familiar.

The ANS is a network of nerves that connects your brain to most of the body’s organs and glands. It’s responsible for the fight or flight response (sympathetic nervous system) and the rest and digest response (parasympathetic nervous system) as well as the digestive system.

Cleveland Clinic has a great overview of how the ANS works: Article

Common symptoms (according to doctors) of a dysfunctional ANS include:

• Pain
• Intense fatigue
• Brain fog
• Shortness of breath
• Dizziness
• Light headed
• Chest pain
• Random heart rate spikes
• Low circulation
• Neuropathy, numbness and tingling
• Insomnia, poor sleep, bad dreams

The Mighty asked patients to share their symptoms which are not typically discussed by doctors. Some of these included:

• Temperature sensitivity
• Can be both hot and cold at the same time
• Inability to stand in the shower
• Need to have one leg propped on something when standing
• Increased anxiety
• Sensory overload
• Inability to tolerate exercise

Mighty Article

All of these (and more) can be a factor. Bending over cuts off my vagus nerve and causes my whole body to shut down. I feel like I’m going to pass out and any energy reserve I had is suddenly gone – I have to go lay down (like right now!). I call it “getting flat”. It’s the only thing that calms my system.

These things can seem so small when I try to tell other people about it. But it can be really difficult to simply shower, go to the grocery store or do laundry.

I usually try to hide it – especially if I’ve been having a good day – but my husband or one of my daughters will say “you just lost all color in your face”. They know. And wherever we are – that’s it, we have to go home.

It’s so frustrating being the person who brings an end to the party because I can’t stand up anymore. There’s so much I want to do – and on days when I start out with a little energy and brain power, it can be utterly discouraging to have to stop the day and just go to bed.

With the flare ups I’m having, I’ve been thinking a lot about how to help my family continue living when I am unable to function.

Perhaps that’s the next story.