Or The Story of How I Developed, Suffered From, Wondered About, Was Diagnosed With and Learned to Cope With Postural Orthostatic Tachycardia Syndrome.
After my daughter was born in 2009, when I stood up from sitting or laying down, I’d be so dizzy I’d lean on something to keep from falling down. This happens to everyone sometimes, maybe when dehydrated, hung over or ill. It gradually snowballed from every once in a while to every time I stood up. I drank more water and was careful when standing.
All of a sudden I would get so tired standing up during hair appointments. It felt like I’d just run a marathon and all I’d done was stand and clip hair. I would get so hot during my appointments that I started wearing black tank tops under all my black shirts so that, mid hair cut, I could divest myself of the extra layers to keep myself from what felt like heat stroke.
Sometime after I’d gotten adjusted to this new weirdness, when standing, I noticed that my heart would just start pounding in my ears. It would beat loud and fast and I’d feel lightheaded and the room would be blindingly bright and the world would spin.
Things got worse and I went from being lightheaded to actually passing out. Upon standing up and after standing for a not so extended period of time (something like 30-45 minutes).
At the same time I was also experiencing other symptoms that I’ll mention here but cover in in other posts. I couldn’t stay awake, I slept all the time, my headaches were getting worse, I had horrible flu like body pain everyday, I had a prolonged panic attack where I pulled out all of my eyelashes and scratched my arms till they bled. I was confused, disoriented, forgetful, and making mistakes I would normally never make.
I finally decided I needed to take some time off to figure out what the fuck was going on and even out my equilibrium. I made a doctor’s appoint. And another. And another. And another.
Luckily, the first doctor I went to this time (I’d been trying to figure out more minor presentations of these symptoms for the 3 years since my daughter was born) actually listened. He believed me, which in my experience is pretty damn impressive.
He diagnosed me with some things (again other posts) and more importantly referred me to specialists that could help me figure this out.
Unfortunately, none of them were able to figure out why I was falling down.
I didn’t go back to work. I couldn’t.
It was about a year later, that I just so happened to be reading an article about rare specialty clinics around the United States. I read about the Faint and Fall Clinic at the University of Utah hospital (mere minutes from where I lived at the time) which was one of the two of it’s kind that existed in the U.S.
I was like, for sure, these dudes could help me out. That’s exactly what I was doing. I was fainting and falling. If they couldn’t help, who could? What luck that there was a specialty clinic right where I live?
As a reminder, it had been 4 years since these symptoms had started and a year that they’d been keeping me from working.
I went to clinic and they told me about POTS. Postural Orthostatic Tachycardia Syndrome. Basically standing up from lying down fucks my whole shit up. My heart rate and blood pressure can’t keep it together when my posture changes so my body goes nuts.
They said this is what I have. Except some of it doesn’t make sense.
They still don’t know why I get lightheaded even when I’m sitting down. They don’t know why my body goes nuts after standing for 20 mins when that’s not quite what POTS does.
They gave me a diagnosis and that is pretty awesome. Just knowing what it is takes away some of the burden of being sick. (Also makes applying for federal disability a more realistic prospect – they don’t like being told, uh, I fall down but don’t know why).
They also said there’s really not much they can do in the way of treatment other than giving me ginormous salt pills. I’m not kidding, they are like 5 grams of salt in pill form and the hardest thing I’ve ever had to swallow. I also have to drink a lot of water. So basically my treatment is salt, water and not doing the things that cause me to fall down ie. standing up.
The nice thing is that for me, it’s somewhat episodic. I’ll have periods of time where I can hardly stand at all without passing out. But then I’ll have some pretty good days where I might be able to walk around a fairly bench laden mall.
But I don’t do a lot of things anymore. I can’t take my kids for a walk around the block. (I make an exception for Halloween but even so, there have been years I’ve only made it to 3 houses before I had to go back home).
On a trip last summer (which is it’s own story again for another time) I took my husband and kids to the Omaha Zoo. I graduated high school in a suburb outside of Omaha, near the Air Force Base my dad was stationed. If you’ve never been to the Omaha Zoo (and why would you unless you actually live in Omaha), it’s the best zoo ever. It’s amazing! Look it up, I’ll spare you a detailed explanation aside from four words. Indiana Jones Rope Bridge.
I was having a particularly bad day, but it was the only day we would be in Omaha. So I sat in a wheel chair. I was 34 years old. And I sat in a wheelchair walking around a zoo with my 3 and 7 year old kids.
Does that sound like a big deal? I can’t decide. Sometimes it feels to me like my life is unfair. I should be able to do these things like a normal parent. I should be able to walk and play with my kids.
Then again sometimes I think, well, at least I’m not dead. At least I’m not paralyzed. I can do my own standing at times and that’s something to be pretty damn thankful for. So suck it up, buttercup.
On the bright side, I was surprised how fun it was rolling myself around in a wheelchair. I also was surprised how quickly I caught on to how to maneuver myself in that thing. It was fun and interesting and slightly humiliating.
I made a diagram of a disabled person the other day. I think that idea has been kind of nagging at my brain since I sat down in that wheelchair last year.
You get some pretty funny looks when you are young, tattooed, and healthy looking rolling around a zoo in a wheel chair. You get especially funny looks when you get up from said wheelchair to grab your 3 year old down from a railing he shouldn’t be climbing on. Some people even say things. Some to your face. Some just to their buddies.
Because you look like a total asshole.
But I’m not a total asshole. I’m just disabled in a way that isn’t obvious.