Last month marked the year anniversary of my last visit to the autonomic center at Stanford.
No I didn't have this date circled on the calendar, I just happened to make the mistake of trying to drive somewhere on the high schools graduation day this year, which reminded me of that same day last year when I was trying my hardest to hold in the desire to pass out and or puke while stuck in miserable traffic.
That tilt table test was a doozy, you guys.
But it got me thinking about how far I've come in this last year. Not that I don't still feel like a ticking time bomb waiting to go off, but things are a lot brighter then they were last summer.
So I thought I'd spread a little of my P.O.T.S knowledge out into the universe because there is nothing I like doing better then telling people what to do.
I'm really pretty good at giving advice about life.
You wouldn't be able to tell this about me because my own life is a giant pile of doodoo, but I do follow my own advice most of the time so maybe I shouldn't start up a new career as a life coach.
Just call me CarinaMD, which is basically what my real life social media handles are, but thats because that's all I could get related to my actual name not because I think I'm a doctor.
Now we have that issue settled down.
(shameless plug: follow me @carinamdee on all the things)
I could go on for days about doctors, and medicine and proper diagnosis. But this is more about after diagnosis.
You've been given this life sentence, what now?
(also see myletter to a newly diagnosed personage, andthis post from a few months ago)
Dear personage recently diagnosed with Postural Orthostatic Tachycardia Syndrome,
I'm very sorry you have to be in this boat with me.
Having P.O.T.S is really hard.
It's going to really suck and you'll find yourself staring out into a room full of people wondering why their bodies will functions normally and yours won't. That won't change really, you'll always have that burden to carry with you and that's the honest truth of it.
But one day you'll go to bed and look back at the day and realize it was a good day. Eventually you'll have that thought about the whole week and someday a month until you reach a point where you can't remember the last time you had a really bad day. But first you have to get through these days. These days that feel harder then anything you could imagine. You will have to appreciate the good minutes and hours because those are the only good you have.
Trying to look at what you do have, won't help you feel any better about it all. Saying that your grateful for the bed that you have and the sandwich you have to eat or grateful that you don't have a terminal illness or a missing limb won't help because you would trade that bed and that sandwich and which upon yourself a missing limb for anything but this body that you have that cannot do anything without a huge struggle. A body where you are darned if you do and darned if you don't. You'll wish for that disease with a death sentence because at least it means the suffering will come to an end eventually, or that you will feel somewhat validated in feeling like your life as you know it is over.
A life with this disorder is not easy by any means, and I can't guarantee that it will ever get easier for you. But you will learn to be prepared, you will accept this life and the overwhelming sense of doom you have now will feel a little less.
You have been given this opportunity to know more about your body then anyone else probably does with theirs. You will learn your limits and how far you can push yourself or when you need to pull back. You will understand what your body is telling you, and what you need to give it. You won't have to worry about passing out at the grocery store anymore, because you will have figured out a system that works for you. Whether that means having someone else pick up your gallon of milk for you, you go an ride a motorized cart, or by bringing along a friend to ease your stress. You won't have to think so hard about daily things, because it will just be a part of how you live.
I know how you are feeling right now, because I've been there. I didn't have anybody to tell me what was coming or how to handle all that this disorder brings along with it.
I wish I could tell you that five years from now you'll look back at this all as a tiny blimp in your now perfect life, but I don't know that. I don't know because I'm still trying to figure it all out. I'm still working through it every day just as much as you are, but it's not nearly as hard or energy consuming and somedays I even wake up and forget that I have this horrible thing in my life because it doesn't have the power over me anymore like it once did.
What I hope for myself, is that someday my body can regain its own control. That it will function the way it was meant to, and I can throw out the medications and the stockings and all the remedies I deal with now and just live my life, because I can. I hope to one day be reliant on myself and my basic human needs, and not pharmaceutical drugs.
I hope this for me, and I hope this for you because we only have this one body and we deserve to make the most of it as we can.
We deserve, just like everyone else here to live, really live every day. To be able to do do what we want with out our bodies holding us back.
Someday things will be fine, or they won't.
But we will be okay.
I've been staring at this page for a good twenty minutes trying to think of something clever to right here in this post, but the truth of it is that is is too hot, my mind is focused on the two episodes of American Horror Story I have left to watch and I am currently using all my internal power not to go make a large pre-dinner snack of tacos.
I can't think right when I'm hot and hungry and in the middle of a Netflix coma.