This is really a story about my brother, Cole, who is one of my favorite people in the world and one of the best and bravest people I know.
Many of y'all probably know that several years ago, my brother became extremely ill and nobody could figure out what was wrong with him. Doctor after doctor poked at him and suggested all kinds of things, but nothing seemed to help. Throughout all of this, Cole had to withdraw from school and suffer through his sickness without any idea of why he was ill. He dealt with every kind of doctor asking him questions and prodding him with things and also faced implications and accusations from lots of people, family, friends, and doctors included, that he was just faking it. Directly related to this, Cole is unbelievably strong and my mom is right there with him. She did not stop fighting and researching and telling off doctors until somebody listened and got Cole what he needed. What he needed was, among other things, a tilt table test. Cole and Mom flew to Cleveland where the doctors did a whole series of tests, including one during which they strapped Cole to a table and tilted it to see how his body would respond. His body did not respond well. He passed out. This was not uncommon for my brother, who in a particularly scary moment once passed out against a bathroom door in his school, but this, in conjunction with other tests, gave the doctors the information that they needed.
Finally, Cole was diagnosed with dysautonomia, which is an umbrella term for a lot of different symptoms and conditions. Essentially, there are a number of things in his autonomic nervous system that are wonky. It impacts everything from the ability to stand up without passing out to the levels of adrenaline in the body, things related to the sympathetic and parasympathetic nervous systems. Cole began to see Dr. Randy Thompson, who is awesome and hilarious and works out of Pensacola. He has dysautonomia himself and so he's very familiar with Cole's struggles and people's inability to understand sometimes. At this point, after lots of medication adjustments and, thankfully, a lot of Cole's symptoms slowing down, my brother is continuing to be his wonderful self without the need of a heavy duty pill case. He is currently in recovery from surgery on a deviated septum caused several years ago by my own poor golf cart driving skills (sorry again, bud). He is well on the way to a return to fratting hard (said with real pride) at Mississippi State. Go Dawgs!
While I have not had Cole's struggles or anything like them, I do have a milder form of dysautonomia. Last summer, I began having chest pains but like an idiot, I ignored them because they scared me. I also started to get dizzy more often. I almost passed out on my girlfriend's bathroom floor. I almost passed out during Trolley Night downtown in Memphis. These things had happened to me in the past. During high school, I once had to flee in the middle of leading a class meeting in order to get sick, take my socks and shoes off, and lie flat on the cold tile of the bathroom floor. I looked absolutely ridiculous I'm sure but I knew I needed to stop myself from passing out and that seemed to be effective. One of my best friends walked into the bathroom to check on me and in excellent best friend fashion giggled for a minute before gettting me water and a cloth and sitting down with me until I stopped shaking and looked less like a ghost. There were other episodes like this over the years. My mom also had these issues and although she won't let Dr. Thompson test her, as he says, "We all know you have it too." Anyway, last summer these chest pains started and eventually, I ended up on a tilt table myself. Six or seven doctors and nurses stared at my heart rate for seventeen minutes while I stood strapped to a table alternating my worrying between the possibility of passing out in front of all of these strangers, the fact that I hadn't shaved my legs, and the very real chance that the towel that was supposed to cover me was going to fall down. It didn't, and I am extremely grateful, although a doctor did have to touch my legs in order to see how the blood pooled there. My heartrate went up very high and stayed up the whole time I was on the table. Not quite normal, but at least I didn't pass out.
After going to see Dr. Thompson and having him look at the results of the test and do some questioning and testing of his own, I was diagnosed with dysautonomia and specifically with POTS (Postural Orthostatic Tachycardia Syndrome). As it turns out, my heartrate is almost always high, even when I'm just sitting down, and Dr. Thompson said people with POTS (florid POTS is my particular brand?) are sometimes diagnosed with anxiety disorders first because the symptoms can be similar. I realized that a lot of things that I thought were normal for everyone are not. It is not normal to be as dizzy as I am as often as I am, to stare off into space for long periods and lose concentration with the frequency that I do. My friends will snap and wave at me; my girlfriend gets freaked out. Most people don't worry about passing out in the heat on the way from the car to the Target or know to cross their legs and tighten their muscles to get rid of the "oh no I'm going to pass out" feeling that happens in the aisle of said Target. There are also the troubles with sleep and extreme exhaustion and of course, the chest pains, which are not life-threatening but indicate that my body isn't getting all of the blood it wants in the places it wants.
Before going to see Dr. Thompson, I thought most people had most of these things the same way that I do and I never used medication other than birth control, because during my period my symptoms took me out of the game in a way that I couldn't manage. I didn't like the idea of being medicated, but oh well. (I did draw the line at compression stockings, which help to keep the blood where it should be but which also help to kill one's social acceptability during summertime or anytime really.) And in terms of sleep alone, whoa what a difference. Honestly I had no idea how little sleep I was getting and how much sleep I actually needed. In addition to the medication, I also needed more water, less heat, more vitamins, and to be more aware of my own limitations. I'm not very good at this last one, and over the last few weeks, I have come to pay the price.
For the first two weeks away from home, I went almost non-stop. I slept very little at weird hours and I ate one meal a day, maybe, while walking around for hours. It was not the smartest thing that I could have done for any number of reasons, not the least of which is that Dr. Thompson advised at the beginning of my diagnosis, in terms of my exercise, that I "walk around the block a time or two and see how it goes." Once I moved into my apartment and slowed down for just a minute, I felt it. My first week here, I woke up one morning and almost fell back into bed. I was exhausted, dizzy, and useless. I felt terrible and could not do anything. I had chest pains, which occur occasionally anyway but which were especially annoying with the exhaustion and aching. I had not taken care of myself and I should have taken care of myself and I'm working on it.
Still, there will be times when I need to, as my Nana says, "listen to my body" and just take some time to sleep and hydrate and pay attention. What is worse than almost passing out near my own bed? Passing out in Warsaw proper (or in Delhi or in Cape Town or in a hostel), and I'd really like to avoid that. So here is a post on my dysautonomia because whether I like it or not, it's real and I've got to pay more attention. It is not always going to be possible for me to do everything exactly right in terms of managing my symptoms, especially this year, because as Dr. Thompson says, we all have to live our lives, but I'm going to try to do better and minimally, give myself some time to recover when I push too hard.
Love you chica!
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