Dysautonomia is a condition where the autonomic nervous system (ANS) doesn’t work properly. But what is the autonomic nervous system?
Imagine the tower at an airport. You know, the control room, where they instruct all the planes? They tell the pilots when it’s safe to land, or to take off, and which bay they should leave from. They give them updates on the wind speed and the weather. That’s like the Autonomic Nervous System (ANS). The ANS controls everything your body does automatically, without you thinking about it. It’s supposed to be in charge of things like heart rate, blood pressure, breathing, oxygenation, circulation, digestion, pupil dilation, perspiration and the function of lots of your organs (heart, stomach, intestines, bladder etc).
Now imagine if most of the tower controllers went on strike, and all the pilots were basically left to fend for themselves. Planes would be crashing in mid-air, there’d be traffic jams of planes all trying to leave from the same bay, and there’d be long delays. That’s Dysautonomia. That’s what it’s like for your systems to try to work without the control tower telling them what to do.
So what does it look like, in everyday life, when your tower controllers have gone on strike? Well, it affects each person differently. There are many different kinds of Dysautonomia (just like there are lots of different kinds of cancer). The kind of Dysautonomia I have is called Postural Orthostatic Tachycardia Syndrome (charmingly labelled ‘POTS’ for short). It’s just a fancy way of saying my body doesn’t cope very well with being upright. Normally, when you are upright, your ANS is working behind the scenes, making sure that your blood is pumping around properly (because gravity wants to just collect it all in your legs) so that your brain is getting enough oxygen. It does this by making small adjustments to your blood pressure and heart rate. But when you have POTS, and the ANS is malfunctioning, there’s no nice man sitting in the control tower helping your body adjust. It’s more like having a three year old sitting in the tower, bashing on the buttons and wailing that they want a cookie.
It means I’m always tired. Always. My body is working so hard just to keep everything functioning, so I use up most of my energy just existing.
Being upright (sitting / standing) is hard work. My body doesn’t do a good job of pumping the blood (and oxygen) around my body. So the longer I’m upright, the more painful and swollen my legs get (blood pooling) and the more tired my brain gets (not enough oxygen). My blood pressure is often low (meaning that my blood is only sluggishly moving around my body, distributing oxygen). My heart rate, when I’m upright, is high (because my body is working so hard just to stay upright). The “maximum heart rate calculation” is 200 minus your age. I’m 26, so according to the maths, I want to aim for a heart rate below 174 when I’m exercising. I can hit that just taking a shower. I often have to lie down after a shower, panting like I’ve just been for a sprint down the street. Sometimes I struggle to breathe – taking deep breaths, but not getting any oxygen (the ANS is in charge of that).
I’m often in pain.
Once it gets to afternoon, I have trouble seeing (because the ANS is in charge of making the adjustments to your pupils that allow you to see in dim light). Sometimes, when I’m especially tired, my eyes won’t focus so I can’t see (because the ANS is in charge of the focus mechanism in your eyes).
I have trouble staying a comfortable temperature (the ANS is in charge of temperature regulation). If I get cold, I find it very hard to get warm again. If I overheat (which can happen very quickly, and makes me sick) it’s very hard to cool down. I often burn myself, because it takes too long for my body to realise that what I’m touching is very hot.
I find bright lights, noise and conversations tiring (my body is already working so hard – now it has to work even harder while it processes all this stuff that’s going on around me). I struggle with words and memory. Blogging is okay, because I can save a draft and come back and edit later. But conversations are hard. Sometimes I forget people’s names. Sometimes I forget MY name. Sometimes I rudely interrupt someone part through their sentence, because my brain hadn’t registered that the pause had passed and they’d started speaking again. Sometimes I start talking, and then forget what I was going to say, or I use the wrong word (like calling singlets “rissoles” here). I forget appointments (thank goodness for phone alarms!) and things that have happened.
Dysautonomia affects my digestive system too. I have problems swallowing sometimes (the ANS just forgets to send the message to the muscles to swallow, and I end up choking). I’m very limited in what I can eat (see here). In addition to only eating a limited list of foods, I have to take special tablets that help break my food down. When the food does get to my intestines, sometimes they don’t bother getting the nutrients out. After that, the ANS sends confusing messages to my bladder and bowels… or no messages at all.
I flew down to Melbourne and had a pacemaker inserted in June. My dodgy ANS would sometimes forget to tell my heart to beat. So my heart would just… stop. Obviously, this is not a good thing. Cue Baymax. He kicks in and beats my heart for me whenever it gets too slow, or calls it quits.
And, just a reminder? You can’t SEE a single one of these symptoms (or the many others that come with a condition like Dysautonomia ). Please remember that, the next time you see someone who “looks” okay, but is in a wheelchair or using a walking aid, or is asking for your seat on the train.
I look healthy.
But I have Dysautonomia.
Now you know a little bit about what that means.
Do you have a chronic illness?
What’s one thing you’d like muggles (non-chronically ill people) to know?
If you’re not chronically ill, what’s one question (or more!) you’d like to have answered about chronic illness?