here's the truth behind the facebook posts

My life was essentially perfect this past summer.

I’d spent the first three weeks doing everything I’d wanted to. I invested my time in three different camps that made my heart so happy, and I felt like I finally had my health under control.  After my third and final week serving as a camp volunteer, like any typical teenage girl, I went and got a coffee at a local coffee shop with my best friend.

Then everything changed.

After drinking about three-fourths of said coffee, I got the jitters. Mind you, about a month before this, I’d stopped drinking caffeine completely. So maybe my body just wasn’t used to the energy, but – and I know how ridiculous this will sound - my heart began to race and well, I freaked out. I got the panicky burning sensation, dizziness, the works.

But it didn’t stop.

I asked to be brought home, I waited hours for the “caffeine jitters” to pass, but they didn’t and honestly, that’s when this nightmare all began. The following weeks were filled with countless doctor’s appointments, three urgent care visits, and one emergency room visit, because the jitters just never went away.

During this time period, I essentially wasted away. My heartrate was incredibly fast all the time, I had shortness of breath, my heart often skipped beats, I was experiencing blood sugar crashes, I was so weak, and worst of all: I lost over fifteen pounds. At my worst, I weighed 100 pounds.

The Cardiologist gave me an all clear, my Rheumatologist saw nothing of concern from a Lupus aspect, and my Primary Care Physician honestly had no idea what to do with me. All of them insisted this was just a byproduct of my anxiety.

So with a diagnosis of hypoglycemia, pretty severe anxiety, and my new blood sugar monitor in hand, I headed back off to college an hour and a half away. I wish I could say things were just all rainbows, but they weren’t.

While the first few nights were met with some invasive anxiety, the real trouble came on the first day of classes. Upon entering the very first class on the very first day of this semester, my heart rate spiked to 140 and the panic ensued. Thus began a flurry of visits to the Health Center at my university, and visits to my Disability Advocate.

Over the course of the semester, I dropped from sixteen credit hours worth of classes to only ten. I only take two classes on campus, and I’ve stopped participating in various organizations that I care about.

To try to figure this out, and finally understand, I’ve been seeing an endocrinologist.  Though various tests came back relatively normal, my endocrinologist thought he knew the reason for all my problems: POTS.

So here I am, almost six months after all this began, a week into steroids meant to help my life become normal again.

But the truth is, I don’t even know what normal is anymore.

I’ve spent months living a real life nightmare.  

I have been incredibly vulnerable throughout this whole journey, but there are so many aspects of this journey that I’ve kept hidden. Not only is POTS a nightmare, but the anxiety that has grown over it is unforgiving.

I spent weeks unable to eat due to the fear that I was dying. I spent months monitoring my heart rate, watching for any spikes, anything irregular. I have been so obsessed with everything involving my body that I can hardly function.

Finding out it was POTS all along was ‘nice’, but this has become a prison. The damage is done; the Anxiety is so real.

I can’t go grocery shopping, I can’t hang out with friends, I have every hospital and urgent care mapped out everywhere I go, and to be so real right now: I can’t even shower without knowing someone is nearby.

What I’m living through right now is quite frankly, Hell on Earth. It is for me, and I’m making it the same way for those around me. Chronic Illness is so unforgiving, so selfish, and it doesn’t care who it drags down with it. I’ve not only successfully ruined my life, but also that of those who I care about the most. I cannot thank these people enough.

It has been the absolute worst six months of my entire being. I would give anything to just go back to normal, but like I said before, I don’t remember what normal is. Everyone around me tells me that I’m brave, that I’m courageous.

But I’m not.

I live every single day with such irrational fear that I’m dying. I am so afraid that I won’t ever go back to the way I was, that this will never end. There are more Doctor’s appointments on the horizon, more mountains to climb, and I just hate doing this. I hate dragging everyone down with me, I hate it. I’m terrified that I won’t live up to the person that I could’ve been before this all started. How can I help people if I can’t even help myself?

But I want to be able to do this. I want to beat this. I want to be someone everyone is proud of.  I want to be a world-changer. I want to do things MY way, NOT my illness’ way.  

So, with all that being said, here’s hoping. Here’s to pushing myself to new things, to doing things that make me afraid. Here’s to standing up to my Tachycardia, to my fear, to the irrational thoughts that plague my mind. Here’s to better and brighter days.

I know there is a lot of strength in admitting that you’re afraid. That acknowledging something like that is the first step to getting better. So here I am, admitting it.

I’m not brave, I’m not strong, and I am so, so afraid, but I am determined to get better, so I will.

I hope.