Sara-Syndrome (or possibly POTS)

My whole life I’ve been weird. I don’t just mean socially (although, yes), but physically too – I’ve always known I am fundamentally different to other people, and admonished myself for not conforming better.

For example, I am always too hot. I overheat so easily that I routinely sleep naked, with a window open, under a towel, whatever the weather. I wash my feet & ankles in cold water at the end of a day just to cool them down. I find staying at other people’s houses in winter kind of difficult, because the heating is always on and it makes me feel dizzy or nauseous or hazy.

Weird, right? Given that it’s pretty much an English occupation to complain about the cold and huddle by a radiator, I’m regarded with understandable suspicion as I fan myself in a bikini by the Christmas tree. I’m just not the same.

Then there’s the fatigue. Over the years I’ve talked with my doctor repeatedly on this subject, convinced it wasn’t normal for a twenty-something to be falling asleep whilst driving, to choose naps over socialising, shopping or shows.
If you woke me at 7am on an average morning and offered a choice between £1mil or another hour’s sleep, I would always, always choose slumber. I mean, I’d regret it later, of course – I’m not crazy – but when sleep has me in its grasp, it’s a non-negotiable need.

On bad days, simple tasks like cooking dinner or carrying Orla leave me weak-legged and faint. I will always choose to lie down instead of sitting –  we bought a day bed for our living room instead of a sofa because of this. A morning’s walk or work wipes me out for the rest of the day, and Orla knows that past 2pm she’ll probably find me in upstairs in bed.

Now I’ve spelled it out like this it absolutely sounds like a problem, but in reality, it’s much less cut and dry. I can go days or weeks without struggling too much. When all my blood tests showed as normal for anaemia etc, I assumed that I was simply pathetically lazy.  I’m pretty awesome at self criticism so it was easy to accept this reality; that when I crawled into bed after baking a cake, or flaked out on walks in favour of napping in the car, I was just being a shitty, lazy person. This fits well in the general inner narrative of my head. I’m used to this sort of label.

Recently I stumbled across an article about POTS, an autonomic nervous disorder that means your blood doesn’t flow around your body properly when you’re standing. It causes your heart to race and your brain to be short on oxygen, resulting in a long list of symptoms, almost all of which I have.

I idly began to check my pulse from time to time, & discovered an amazing secret: my heartbeat regularly hikes up to as much as 170 bpm during normal, non-strenuous daily activity. Lying on the sofa, it can be around 100, 120, 130.
 To put that into context, Rory’s pulse never really goes about 50bpm. 40-90 is roughly normal for adults, and 230 is the point at which you basically explode and die or something similar. This is probably why aerobic activity makes me feel like I’m walking through a brick wall, and is almost definitely why sometimes I feel like I’m having a panic attack without the actual panic. My body feels like it’s done a 100m sprint when I make a cup of tea, & just possibly, those times when I can’t keep my eyes open are linked to the fact that my blood is all gathered at my (overly warm, need a cold wash) feet. 

Amazing, right?

POTS isn’t a controversial diagnosis – it’s a fully recognised condition and is diagnosed with a simple, easy test. The problem is it’s also massively under-diagnosed and unknown, so I had to convince my doctor to google it before he could even think about referring me for tests.

I’m waiting for an appointment with a cardiologist in November who may or may not be the right person to help me work it out. Perhaps it’s not POTS at all, and I’m a raging hypochondriac, but the evidence of my heart rate is finally a solid, undeniably fact that I can’t guilt or dismiss my way out of. 
Maybe finally I’m on track to a solution, and becoming a little bit more normal. I can’t wait to tell cardboard Luke ??.

Are any of you dealing with a chronic condition? I have a feeling many of us are and just don’t tend to talk about it…