One of the things about living with Ehlers-Danlos Syndrome is that you don’t just live with EDS, you live with EDS and all its friends and relatives. And my, oh my, does EDS have a lot of them.
Today, I officially got diagnosed with POTS – Postural Orthostatic Tachycardia Syndrome, which is a particular variety of dysautonomia. To understand what POTS does, I have to give you a little bit of background biology.
Your autonomic nervous system regulates all of the involuntary parts of your body – digestion, heartbeat, heating and cooling mechanisms, so on. Now, when you move into a more vertical position (say, from laying down to sitting, or sitting to standing), gravity has a greater affect on where your blood goes. A certain amount pools in your lower limbs and your abdomen. In a normal person, the veins in your body tighten slightly and your diasystolic blood pressure increases a bit, to make sure your head gets enough blood.
In someone with POTS, that increase in diasystolic pressure never happens. In fact, blood pressure usually falls. To make up for it, the heart starts racing (which is known as tachycardia). The result is that you end up with dizziness, headaches, nausea (even vomiting), disorientation, fainting, near-fainting, tunnel vision…the list is really quite long. It’s much worse in the heat, or when you’re dehydrated, or when your electrolytes are imbalanced.
This is the reason I got stuck in the bedroom in the heat wave a couple weeks ago. It’s why I have to stay in climate-controlled places. It’s why I always have water by my side, and have to snack on salty foods often. It’s hurt me, it’s come close to hurting Hudson (when I nearly fell on him and squashed him). It’s why my heart races every now and again, for no reason. It’s why I fall back down into chairs a couple of times a day when I go to stand up.
I’ve suspected I might have this for…well, years. It’s gotten perceptibly worse the last 3 years in a row. Finally, I’m symptomatic enough for them to put a name on it.
Here’s the hard part of that: expecting the diagnosis doesn’t make it less upsetting. It may seem silly. You would think, okay, I know this is likely to be the result, so I can emotionally brace myself and it won’t swamp me nearly as badly as it would have if it was a surprise.
Well, not exactly. The things that make a diagnosis tough don’t change just because you are expecting that diagnosis. It doesn’t make your symptoms any less real. It doesn’t make them any more likely to go away – quite the opposite, most of the time. It in fact makes it clear you aren’t imagining them, which can be affirming but also means that these annoying, even upsetting things are real.
So tonight, when I’ve had something of a triumph in getting a doctor to acknowledge a set of symptoms (most of which can’t be measured) and give them a name even though the test wasn’t 100% conclusive, I’m frustrated and angry and upset. I’m so damn tired of there being one more diagnosis, one more thing wrong with me, one addendum to the list of things to watch out for and activities I ought not to do.
I suppose when I put it that way, it makes sense, doesn’t it?