Dear Body, I hate you but thank you...

I'm going to take a wild guess that most of you have never heard of dysautonomia or autonomic nervous disorders. I'll even venture to say most of you may not even know what your autonomic nervous system is or does. It's only mildly important as in it controls/regulates one's heart rate, blood pressure, body temperature, breathing yadda yadda yadda. Don't feel too bad though. I had never heard of it prior to being diagnosed with two forms of dysautonomia (neurocardiogenic syncope & inappropriate sinus tachycardia). If you're wanting more information on dysautonomia you can read this past blog post what the *bleep* is dysautonomia

Anywho October is Dysautonomia Awareness month, which has forced me to do some reflection. Living with dysautonomia the past two year has been a bit of a whirlwind. I have had to learn (the hard way cause I'm stubborn) that there is no black and white with autonomic disorders. It's all grey.
Dysautonomia is a spectrum of symptoms that range from mildly irritating to absolutely debilitating and living with it means that you move up and down that spectrum. There are horrible days, bad days, decent days, good days and every now and then a great day. It never fails that I'll be doing great and then a flare up comes out of nowhere and knocks me off my feet, sometimes literally. 

This is my open letter to my body, specifically my naughty autonomic nervous system. 

photo credit

 
Dear Body, 

I hate you. 

I hate that you are as predictable as a two year old. How can everything be a trigger?! Seasonal allergies, not sleeping enough, warm weather, humidity, high altitude, standing for too long, hot showers, not drinking enough liters of fluids, stress or absolutely nothing. Basically life is a trigger. You are so touchy. 

I hate that you make me feel like shit on a daily basis and that I'm actually use to it. How does my normal consist of nausea, chest pain, dizziness, pre-syncope, flushing, hot flashes, numbness & tingling, a heart that beats too slow or too fast and changes without warning?! You are quite dramatic.

I hate that you are an "invisible disease" I can be crashing on the inside (heart rate can be 120-150+ beats per minute, nauseous, chest pain and dizzy) but look totally fine on the outside. It's a lot of fun trying to explain to strangers what's going on when I don't look like I'm dying. Thanks for making me look like a crazy person. You are so clever. 

I hate that you interrupt and alter life in the most annoying ways. I like being in control but you love to remind me that you in fact are in control. For instance, not being able to live in Colorado Springs, having to take time off of work for weeks at a time after a flare up, or having to push back starting nurse practitioner clinicals two freaking years in a row. You are so inconsiderate.  

I hate that you make me doubt myself sometimes. Simple things become nerve racking thanks to flare ups. Driving a car, working a 12 hour shift, staying in graduate school, becoming a mom, walking up stairs, going grocery shopping. You know how to steal confidence. Basically you suck.

I hate that I'm 25 years old but sometimes I feel more like an 80 year old. Like when I have a doctor's appointment and I'm the youngest person in the waiting room by a couple decades. Or when I am putting on compression socks and compression sleeves. Or when I am double checking that my purse (now a days it's a diaper bag) has my pill cutter and medications. Or when I bought a pulse oximeter and blood pressure machine. Or all the tests I have had to do. Or when I almost pass up walking up a flight of stairs. the list could go on and on. 

so dear body, I hate you but thank you. 

I know that it could be so much worse. Thank you for every good/decent day. Thanks for sometimes giving me a heads up that you're pissed. I do love being able to avoid a flare up. Also thanks for not being above bribery. It's amazing what some rest, salt, fluids and medications can sometimes do. And then again sometimes it doesn't matter what I do you just throw a huge tantrum. Thank you for letting me do twelve hour shifts as a nurse. When all this first started I was terrified I wouldn't be able to continue working in a hospital. Thank you for allowing me to be pregnant (even thought it was rough), to have the best case scenario delivery and keep up with an energetic almost seven month old. Even though you affect my life in so many ways you have not ruined it. Thank you for still allowing me to be me. I'm very thankful to be able to pursue the things I enjoy.  

Since one's autonomic nervous system is slightly important and I can't figure out a way to trade mine in for a well behaved one, I guess we'll keep up this love/hate relationship. Sometimes we are friends and sometimes we are enemies. That's just life. So yes, dear body I hate you but I thank you.

Here's to salting everything I eat like crazy, wearing compression socks and compression sleeves, drinking liters and liters of water and trying to keep up with the demands of my autonomic system. Happy Dysautonomia Awareness Month!!! 

yours truly,

LeeAnn