Tuesday, 21 July 2009

The Horse with no Name

Ok so I have Bob. But Bob is a just a general term, there are many different types of Bob. There's

Postural Orthostatic Tachycardia Syndrome (POTS),
Neurocardiogenic Syncope (NCS), and
Orthostatic Intolerance (OI), just to name a few.

But what do do you do when you don't have a sub-type? I'm too odd to fit into any specific sub-type. Over the last couple of years I've been told I have a variety of sub-types including NCS and OI and most recently I was told to consider Pure Autonomic Failure as a real possibility. Woo Hoo! It just gets better and better. I did start with absolutely no idea just a group of weird symptoms that no doctor could understand, so I guess that's progress?

Currently I am living with the horse with no name.

Each time it's been like trying to squish a round peg into a square hole (though in my case I may be more akin to a dodecahedron peg). I've never really fit in anywhere. My symptoms are odd. Well to be honest I've always been a little left of centre, Bob is just the latest instalment. My prof tells me that he has seen only 1 or 2 patients in his entire career with my symptoms. Again I use the words Woo Hoo! I'll admit it can be just a little disconcerting when your cardiologist can't find your pulse. I'm sure I have one, it would be rather hard to write this blog if I really had no pulse. I like to think that makes me "Special" (yes I am deluding myself and am living in the world of denial, but hey whatever works right!).

This is one of the reasons I named it Bob. No one else can give me a name so I'll take back a little bit of my power and name it myself. It's rather hard to be intimidated by something named Bob. Bob is a bald, middle-aged accounts manger from Balwyn, who likes watching Antiques Roadshow and playing scrabble online. I can deal with Bob!

So I am officially a FREAK!!! (Not that that is any surprise to my family and friends). I'm off to have some more delightful tests to see if they can decided exactly what type of freak I am. Who knows maybe I'll get a new name I'll let you know.

Michelle aka "the FREAK".

1 comment:

  1. Umm, I may also have a friend name Bob. I have NCS and OI. Hell, they don't what else because no one around my area knows how to treat this. I so love your ways with words and you seemed to express what so many of can't do. Many warms/cool ( which ever you may need at the time)Hugs,


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