Dysautonomi-wha?

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I'm a day behind with the Blog Like Crazy Project. Yesterday's prompt was to write something risky. I wrote this several weeks ago but didn't post it. But then I saw that prompt and knew I should. Here we go.

I have dysautonomia, which I rarely acknowledge to other people and quite often choose to not acknowledge myself. Most people have never heard of it. In a nutshell, it's a disregulation of the autonomic system -- everything you don't think about (like blood pressure, breathing, and the body's temperature control.) I have a special kind (and it sure is special) called postural orthostatic intolerance, or POTS. It goes like this:

"The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder." - Dysautonomia Information Network

Luckily I've been able to have a great quality of life despite of POTS. So much so, that every time I read this paragraph I think, "That is not me!" Then I have trouble standing up to wash the dishes and get lightheaded and remember, "Oh yeah, it is." 

In a nutshell, if I don't take care of myself, if I'm over tired or not properly fed and watered, or overheated (oh yes, I'm even more of a diva than most people know) I get lightheaded, dizzy, and extremely fatigued. I get headaches that stretch for days. Occasionally I even pass out, which is a really fun party trick. The first time it happened was at band camp  (...this one time at band camp).

Another time I was interviewing an actor who played Buddy Holly, and stood for too long in the West Texas heat, and passed out. When I woke up Buddy Holly was standing over me, which was really confusing. Another time I was in line for pizza at the Papa John's Bowl, seeing my Gamecocks play. All of these things have similarities: standing for a long time + hot or cold weather = Erin down.

I've had this since childhood, the first time things got blurry and went black, when the sounds got muffled and I first fell down. Neurologists put wires on my heads back then and couldn't figure it out. I would grow out of it, they said.

***

When a serious POTS episode does happen, I know it's occurring. Sound gets fuzzy and it's as if I'm in a tunnel. There are two choices and I must make a decision quickly. Sit down immediately, drink a lot of water, get some rest. Or choose to ignore and pass out for about 15 seconds. When I emerge I check to make sure I haven't ht my head. I apologize to the people around me and launch into the "I have something called dysautonomia" speech.

Luckily I've been around so many Good Samaritans. The minister who sat with me when I passed out after a standing room only Sidewalk Film Festival Screening. He waited to make sure I had a ride. The woman in New Orleans who waited until the ambulance came (I don't need an ambulance, but it's hard to tell someone that when they see you fall). Nice people. 

About five years ago I was properly diagnosed, and know how to make the lifestyle changes it requires. But, to put it mildly, I don't always make those adjustments. I have a good run of weeks or months and forget, till I have to sit down in the shower because I can't stand up. Dysautonomia is a constant exercise in mindfulness, in listening to the subtle signs your body sends because if you don't, bad things happen. Or at least annoying things.

Usually it's not that dramatic, just low-level frustrating. Like now, in the fall. I have a difficult time in the cold, and have started retreating indoors. I probably won't come to your bonfire, unless I am in 42 layers and sitting inside. There are days when I have a bad headache or not a whole lot of energy. I work through it.

I'm trying to do the things I have to do. Quitting caffeine, which is essential, has been particularly tough. Trying for 30 minutes of cardio most days of the week has been so-so. Drinking a lot of water is the easiest.

So, there it is. That's my reveal. I have been hesitant to share it for several reasons. My whole life I've been self-conscious about not being able to physically exert myself like other people. (No excuse though -- exercise is vital to stay healthy with this, but I have to do it at my own pace.) I get self-conscious about the prospect of fainting, and am mortified when I try to explain it to strangers who don't understand what's happening. 

But I know how to prevent it. 

The biggest reason I think I never shared is that I never wanted anyone to think I was weak or that it would prevent me from doing a great job as a reporter, a writer, and an editor. But I'm 15 years into that now. I got this. I know I'm good at these things despite of dysauto-what. 

It's just that now you know too.