from me to you

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 you're 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 wish 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.

xoxo
Carina