If not for me...

I have found such interesting ... stuff ... on the Facebook support group.  Some of it is not something anyone outside of life with dysautonomia would understand.  Not really, I think.

I know.  I can hear you now.  "Myrtle, you don't like to be touched!"  Yes, I know, but sometimes I need to hear those very words and to have some sort of physical connection ... if not a hug, a hand squeeze.

I do not like memes.  I actually do not like that we made up a word for them.  But I have found a whole lot of memes on that support group that I do like.  They are what I long to hear outside myself. This one is so ... apt.  It is perfect.  And it is what I wish that everyone would know about me.  This is one reason why going to the symphony is so difficult.  More than two hours of sitting.  I wish I were brave enough to ask the Fort Wayne Philharmonic to allow me to bring a pillow and lie down somewhere, perhaps in the side seats not sold or something.  But, oh, my, does lying down on the floor upset others something fierce!

For someone who earned her Ph.D. in two and a half years, this is devastating to look at and yet I like it because I HATE when I try to talk about cognitive dysfunction and folk respond with, "Oh, but you are still so smart."  It is like being punched in the stomach and smothered at the same time.  Those words are ever so cruel, even if the speaker intended them to be otherwise.

This one, I think, shows what a difference my life is from others.  At least others who do not suffer from dysautonomia.

There are more, but these are the ones that I saved to my computer so that I would have them for me. So I would have them as a reminder that I am not alone.  That I am not crazy.  That I am not an hysterical female.  Yes, I have a hospital admission where I was charted as exhibiting hysteria.  SIGH.

As I mentioned, I removed the support group notifications from my newsfeed because they are often difficult to take.  Stories of suffering.  Stories of being ignored or mistreated.  Stories of despair.  Stories that are nothing short of suicidal pleas.  I only go to the support group page when I am feeling bolstered (such as after suffocating Amos for a while as I crush him against my body) and when I am feeling safe.

Because of this ... risk factor ... of the support group I have considered leaving it, thinking that I had at least gotten what I wanted from checking it out.  However, today, I was reminded of the riches it has to offer.





So much of what I have tried to share about living with it is covered in this video... objectively and subjectively.  I am ever so thankful for the support group if only to finally have a comprehensive way to introduce someone to life with dysautonomia, even if the video is primarily focused on POTS when there are many other illnesses beneath the dysautonomia umbrella, because it presents the many and varied ways dysautonomia affects the body and one's life.

If not for me, for one of the million or so Americans or the millions more across the globe suffering from dysautonomia, please spend the 45 minutes it takes watch this video.