Sunday, January 24, 2010

No longer on the River DeNial

For the first time I realize that I have accepted my dysautonomiaas normal. I don't seem to be comparing what I could do in the past, with what I can't do in the now. Being proactive to my dysautonomia symptoms instead of reactive. I'm beginning to have realistic expectations of my days instead of disappointment at all the things I can no longer do. What a relief it is to take my life off the river of denial and step onto the solid ground of reality.

It's funny how the things I thought I could never get use to are a part of who I now am. Some of my normals include:

  • Waking up ready to down a large quantity of water before getting out of bed to relieve an already full badder.

  • Dealing with nausea every morning, and not getting a precious bundle of joy after 9 months of morning sickness.

  • Wearing compression stockings at the young age of 49 instead of the ripe old age of 70.

  • Parking in the handicapped parking, and being ready to defend myself when someone questions why someone who doesn't look handicapped is using the spot. My fists are clenched and ready to fight. My fighting techniques would get anyone rolling on the ground in laughter, and they would probably walk away wondering if the state considers the insane handicapped, and that's how I acquired my plates.

  • Purple, my favorite color, how many people can say that their hands and feet show off their favorite color every day.

  • Always being prepared that bending over to pick up something off the floor, may leave me looking and feeling like a drunken sailor.

  • Accepting the fact that during my drunken sailor state, others may be questioning my sobriety.

  • On those days when oxygen is in short supply, it's ok that my sentences will usually be incomplete and end with an ahhhhh what's that word? Or what's his name? Or even what's your name?

  • Using a pill box with the days of the week stamped on it doesn't make you old.

  • When my heart is racing through my chest and I'm short of breath, I just pretend that I just ran the 6K.

  • It's ok to be flopping out of the bathtub like a fish out of water ( I can see my gills, oh I mean nostals gasping for air) because of my heat intolerance and gravity issues.

  • Wearing a medical id tag can be fashionable with a little web searching.

  • Asking for help actually makes a task more fun.

  • I believe I know more about the auto immune system than most doctors.

  • I won't get arrested for breaking some sort of health law for eating salty snacks and adding a ton of salt to my food.

  • Being white because of the lack of sunshine is the "new black" of fashion.

  • Icevests may not be a fashion statement, but they do attract hugs.

  • Eating 6 meals a day won't cause obesity.

  • Some times it's worth the price of a day in bed to do the thing you love most!

Living with dysautonomia has been challenging, but I'm getting use to my new normal. As most of you know I love the serenity prayer, one part has always stumped me "accepting hardship as a pathway to peace". How could hardship lead to peace? Well in my case, it's the accepting of the hardship of dysautonomia instead of fighting it that has made my life more at peace. I still have those days when the symptoms are difficult to carry, but that's when I rely on friends to carry the burden with me.

Always inspired,


1 comment:

  1. Loved your post... I especially relate to the one about the handicap tag, as I am 23 and I have one... I look healthy for the most part, but as you well know having POTS yourself, I feel very unhealthy. Though I haven't had to defend myself as of yet, I have some zingers prepared... something that pointedly tells the other person to not practice medicine without a licence but will leave them laughing.

    I completely understand, too, the one about the short supply of oxygen (the really bad brain fog days), as when I have them, I sound like a vally girl, since I use the word like, like, you know, about, um, like, um ahhhh, a... crap! What's that word? It's a really big number.... What was I talking about?? :D :D :D It's frustrating for me, I guess since my diagnosis is so new. I used to have much pride about my intelligence, but half of the time (or most of it, anyways) I sound like a babbling insane person who's had one too many shock treatments. I hate that in one of my classes, in class discussion and participation counts as 1/3 of the grade. At least it only meets once a week, so I am praying that I'll have a good day when I have that class.

    Also, about the salt... At school on Monday, I was eating some french fries, and I added at least two salt packets to both the fries and the ketchup... one of the girls who was sitting with me kept looking at my food and not me when we were talking. I now know how someone who is... well endowed feels when talking to men.

    Again, thank you for such an inspiring write-up! A good balance of humor and inspiration. Thanks for a good read!