Welcome to the Climb. Duration: Unknown

Last night my mom and I went to hear a sleep doctor speak at the Jung Center here in Houston.  His name was Dr. Abene and he specializes in insomnia. After a introduction to the biological sides of sleeping and being awake he talked about how he evaluates patients when he meets them first. I did not come into the talk thinking that I wanted to make an appointment with him but when he started talking about the things he tries to rule out before treating for a sleep disorder I began to feel disappointment sweep over me. But this was a different kind of disappointment than a little kid would feel if they were denied candy. I felt the loss of something I never realized I had: hope for another diagnosis that would be easier to treat than Dysautonomia.

I hadn't really thought much about getting a diagnosis last year when I went in for my tilt table test (the test that determines whether a patient has Dysautonomia.) It felt like just another doctors appointment that would result in them telling me the same thing they always did: exercise more and stop taking naps. Before the tilt table test I never had a name for what was happening for me. Looking back I realize, subconsciously, I felt I just couldn't handle the stress of school and was being lazy to avoid it. I never thought for a second that the medical world was interested in what was happening to me, let alone had a name for it. It took a while even after the test and diagnosis to realize that what was happening to me was not my fault.

So now I had a name for the past two years, I had a explanation, I had an excuse. But the diagnosis also took away my hiding spot. I was no longer able to give the excuse of ignorance. I was expected to take the information that was given to me by the diagnosis and begin to dig myself out of this hole. That was the hardest part at the beginning. The combination of my out-of-whack autonomic system, depression, and anxiety left me with a paper thin amount of motivation and ambition. In the next few days and weeks the hopes built up from the new diagnosis began to fade as I realized the climb I was facing. Medication didn't work magic, exercise scared me, and I failed every attempt to limit my daytime sleeping. The reality of the diagnosis dragged me down even lower.

Now that I can walk for fifteen minutes on a treadmill with out collapsing into my 'mono monster comma' and have shaved my naps down to a few hours a day I can see the progress that I have made. But it's been a year since the test, twelve months of battle with my own body, and I'm still fighting day to day. I guess that the idea of learning more about the science of sleep gave my mind a glimmer of hope to hold onto for the possibility of a faster recovery. 

While reading the slides on Dr. Abene's powerpoint, I realized that my disorder, although named and acknowledged by the medical community, is far from being understood as well as disorders like insomnia. My symptoms weave in and out of other disorders and medication side effects and research is far from discovering why each is caused. My disappoint tonight was the realization that whatever is happening in my body is not only a mystery to me but also to the world, meaning that the end to my climb is no more clear to my doctors than it is to me.

Dysauto-what?

November of 2012 I was diagnosed with Dysautonomia (I'll break it down for any of my fellow dyslexics or dyslexics-at-heart: pronounced 'dis-auto-no-mia'. It took me about two weeks to finally get it right and then another month to remember it right off the top of my head.) It's a form of POTS which is short for Postural Orthostatic Tachycardia Syndrome. Trust me, I completely understand that, unless you or someone you know very well has either of these, you have no idea what you have read so far.

Start with POTS.
POTS is a physical disorder that compromises the bodies ability to combat gravity. A completely healthy body, when standing upright, is able to counteract gravity by contracting arteries in the legs to keep blood flowing throughout the body instead of getting stuck in the lower extremities. The main symptom of POTS is an extreme increase in heart rate when you change from a sitting or reclining position to standing up.

So Dysautonomia basically means that my 'autonomic system' (things that my body should be able to control without me thinking about it) is completely out of whack. Enjoy this scientifically accurate drawing of my body vs. a healthy human's body:

So the combination of POTS and Dysautonomia results in these symptoms:

- dizziness or vertigo when changing from laying to sitting and sitting to standing and sometimes just when I stand for too long

- extreme, chronic exhaustion

- an insane inability to exercise

- weird, spotty, purplish-blue legs when I stand for too long

- extremely low blood pressure

- extremely high heart rate

- headaches usually associated with not having enough blood circulation to the head due to dehydration

- this thing, commonly referred as 'brain fog', which is caused by low blood circulation in the head which results in an inability to focus and short term memory loss; the name pretty much describes how it feels

- many, many others that are ridiculously widespread and seemingly unrelated

All of these symptoms make my life extremely difficult; the act of simply changing positions from laying to sitting in the morning has proved to be one of the most frustrating parts of my day for about three years now. But the hardest part of this process was the two years I spent not knowing why I was sleeping for up to twenty hours a day, why I was not able to focus on even the most basic work in school, and why I just could not get any better. 

This blog, along with simply being an outlet for me to vent my sporadic thoughts, (I hope) will become one more place where people can find out they are not alone in what they are going through. Whether you are struggling with Dysautonomia, POTS, depression, anxiety, or just being a person in this 'whatever' world we have to live in, I hope that, at some point, something I write hits home and lets you know that there is at least one other person in the world you can relate to at least in the smallest way possible, because I know what it feels like to question if anyone will truly ever know my reality.