Dysautonomia, this is a medical syndrome that means dysfunctioning autonomic nervous system.  Meaning sometimes it works, and sometimes it doesn’t.  It works for awhile, and then it starts to give out.  The autonomic nervous system is the part of the central nervous system that regulates all those things that seem automatic, like breathing, heart rate, blood pressure, digestion, speaking, temperature control, sleeping…  Often times this is an accompaniment to disease, which when treated relieves one of this syndrome.   Other times, like my case, it’s on it’s own.

I found out that this is my mystery medical syndrome after 3 years of extensive, sometimes invasive, medical testing.  This is not a rare thing, but it isn’t common either.  It isn’t common to meet a health care worker that has any experience or even knowledge of this syndrome.  One needs a neurologist who specializes in the autonomic system.  I have a fine one, and since I met her I have come back to life, and learned to live with this syndrome.

What it means to have this syndrome is that I have to be careful about everything I do, because overtaxing any part of me leads to extreme fatigue, that takes a good day, sometimes more to recover from.  Exercise intolerance is part of the syndrome, but I need exercise, and I even crave it!, ( I even miss it, since it used to be a big part of my life)  but I can’t push it.  So I take my daily walks with Hazel ( a standard poodle ), paying attention to how I feel the whole time, sometimes we cut our walks to just 3 minutes, like in summer, because heat intolerance is also part of this, but sometimes we can walk for a half an hour, with just a one hour rest afterwards., and then feel a return of energy that lets me go back to the easel to paint.  I also do yoga for about 45 minutes most days, staying in shavasana ( which is a pose of stillness)  for as long as it takes afterwards.

Things that make dysautonomia worse: exercise, heat, eating, smoke, standing for more than 15 to 20 minutes at a time, climbing stairs, reaching for things, raising my arms up to wash my hair or reach a tough spot with paint, bending down, standing up, steam from showers, any humidity….    So when I take my walk with Hazel, I know I need a rest when I return, which I also know I need after eating anything, so I walk her right before lunch, and combine my needed rest from both activities, a sort of outsmarting that saves me time.  I restructured the way I paint so I mostly sit at my easel, which let’s me work longer than standing at it, like I once preferred, and still would if it was possible.  I have an easel that raises the painting up and down with a turn of a handle, and a rolling stool that also goes up and down.   Between the two I can work on quite large canvases while sitting on my stool.  I can also push off from the easel to the table to retrieve more paint….

Conditions  I am intimate with: dyspnea = shortness of breath, ;   dysphonia= lack of volume when I try to speak, ;  venous pooling= when blood pool around your ankles from standing too long, gravity at work, or around the abdomen after eating, ;  insomnia, malabsorption syndrome, multiple food intolerances, at the end of the day if I haven’t been careful enough my legs drag when I try to walk.   Low blood pressure, fast heart rate, dizziness.  Sometimes, moments, 1/2 hours, I am entirely free of noticing any of these symptoms, but I must remain mindful to keep them at bay.  As time goes on, I get better at the mindful part, but there are times when control is beyond what I can do, like standing in a long line at a store, when I often have to simply forgo the purchase of the needed item, knowing I need to be able to walk out of the store more than I need what I went in there for.   The pace I have to live at is tricky to fit in to our fast paced society, I ration out my very limited energy more carefully than one would ration gold.


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