Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

What is Normal Anyways? #NHBPM Carnival

Written by Katie. Posted in Ehlers-Danlos Awareness, Invisible Illness, POTS Awareness

I have decided to join the National Health Blog Post Month Carnival.  I just may be crazy with the way I have been feeling and with everything that is jam-packed on my November calendar, but I am going to do the best I can.  The challenge is to post everyday for the month of November, using the daily health prompts provided by WEGO Health. 

Today’s?

What is the weirdest thing about your health?

I decided to make a top 10 list…David Letterman style…

10. When I shower my legs turn bright purple.  Brad always quotes Charlie and the Chocolate Factory with, “You’re turning violet, Violet!”

9.  I can’t hold still.  I am constantly moving, shifting, squatting, toe rising, marching, walking in circles…you name it.  I look like I have a major case of ADHD.  The more I stay still the more my body hurts, and my POTS become worse.

8.  I can do the elliptical for 40 minutes but ask me to stand in one place for 3 minutes without moving and I think I’m going to die.

7.  Swimming is one of the things that makes me the sickest, along with bright lights, and standing in long lines.  Cedar Point is my idea of a POTS nightmare.

6.  My epicanthal folds on my eyes are an EDS marker.  Who knew?

5.  There are times that you will find me laying down in random places (Target, Walgreens, Subway) in order to keep from passing out.  Then I break out the soy sauce.   Is that weird?

4.  The problem with my EDS is that I am too stretchy (in very simplistic terms).  Yet I am constantly dealing with rock hard muscles and tightness, since the muscles are trying to hold my body together, to keep it from coming unglued.  Ironic.

3.  When I get really foggy, I can’t find the words I want to say, and if I can, they start to become slurred.  I feel like I have to explain that no, I have not been drinking.

2.  When my neck pain is flaring, my POTS is worse.  I am including this fact because some medical professionals I have told are the ones who find this weird.  But I am certain that one day, they will find the link between the two.  I just know it.

and the #1 weirdest thing about my health is…

1.  There are some days I pee every 3-5 minutes.  I am not exaggerating.  It has something to do with my Autonomic Nervous System going into overdrive. Fun times…especially on travel days.

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