Awareness...

October is Dysautonomia Awareness Month.  This year, I have not posted like I did last year, mostly because I oft write about my struggles.  However, I thought that this video was a good overview of the neurological disorder:






I particularly like the image here, that you see as the image for the video:

The two things on here that I do not see often on other listings, despite how common they are, are: 1) Dysphagia (difficulty swallowing) and 2) Temperature Dysregulation.  I watched the animator draw these symptoms and I was struck ... dumb, I guess ... by what my life has become.

Of course, what is missing on this collection of symptoms are: 1) Gastroparesis, 2) Small Bowel Bacterial Overgrowth (SBBO), and 3) Constipation.  Basically, what is left out is how wretchedly dysautonomia messes with your digestive system ... really ... with anything that is an autonomic (automatic) process in your body.

The other day, on one of the two small Facebook dysautonomia groups' wall, I saw someone post about having tachycardia and shortness of breath just from rolling over in bed.  For the smallest moment, I felt un-alone.  It is so very difficult to sleep, as I wrote about yesterday.  Having to have the ice packs, though, is only a small part of it.  When I roll over to my right side, my heart rate goes up and I am short of breath.  I can feel my heart pounding, hear it in my ears, and it wakes me.  And, frankly, anytime I am short of breath I am scared.  It is such a frightening sensation.

Then there is the problem of the nerves in my arms going to sleep, which causes both numbness and pain.  I also struggle with the pain of the weight of the bedding on my always painful abdomen.  And I oft get dizzy when I move my head.  The oddest thing is to faint whilst in bed, sometimes when I am reading.  There I am, all calm and peaceful, and I pass out.  Confusing.  Annoying.  Frightening.

I could go on and on and on about the battle in bed, especially with nightmares and night terrors, but I do not believe those are from Dysauonomia.  But perhaps.  Maybe ... since the anxiety is a symptom of Dysautonomia.  Those aside, the point is that it is a battle to sleep, which is doubly difficult since I need more sleep.

Of late, I have been deeply discouraged over battling chronic illness.  I do think it like riding the proverbial carousel.  Round and round in circles, whilst moving up and down.  Disorientating.  Wearying.  Difficult to focus.  But it is also an opportunity to learn ... to learn to be grateful for the smallest moments and to learn to live in the in between.