Hello readers and followers!
I thought I’d give you all an update on how I’m doing since my diagnosis of Postural Tachycardia Syndrome, otherwise known as PoTS. I like to write these little updates, firstly because it helps me process and deal with my own condition (which is chronic and uncurable), and secondly because although the condition isn’t necessarily rare, it is rarely diagnosed, and I’d like to do all I can to help and support others who are fighting for a diagnosis, or who are living with the condition.
Today I’d like to talk to you about what is happening inside my body when/if you meet me, because more often than not, I will seem absolutely and completely fine.
Right now, as I am writing this, I am distinctly not-fine – but nobody would ever know it. Any movement that involves a gravitational tug (such as standing up) is giving me horrid dizzy spells. And those frequent dizzy spells bring on headaches and grogginess. Also, the gentlest of slow walking is completely knackering me out – thank god for the rain, so that you can’t necessarily tell how badly I’m sweating!
So why is this happening?
Due to a condition called Hypermobility Syndrome (one in five people have some form of hypermobility or double-jointedness in various parts of their body – it becomes the much rarer ‘syndrome’ when it starts to negatively affect you) my blood vessels are much springier than they should be. This means that my heart has to work extra hard (doubly, or sometimes triply) to get the blood around my body, as the blood vessels don’t constrict as they should. The neurological process that makes my heart beat too fast and too hard is what’s called PoTS. Most people with PoTs have hypermobility syndrome, but not everybody with hypermobility syndrome has PoTS.
Due to a silly thing called gravity, liquid like blood likes to pool in the lower extremeties (sometimes my feet actually swell with what is known as venous pooling). Upon standing, my heart goes ‘HOLY COW! WE NEED SOME BLOOD UP HERE!!!’ and goes into overdrive. My heart rate will rise (you need a rise of 30 bpm or more to be diagnosed with PoTS) and my blood pressure will drop, as it simply can’t get up to my chest and head in time. Hence, the dizzy spells. Every bloody time I stand up. I can help prevent this by moving my legs a little bit before I stand to get the blood pumping, but to be honest, most times I forget. And then, if I stand up and move far too quickly, I leave myself open to fainting. WHICH IS FUN (not).
This is why, when you see me out and about, I’m probably walking with a cane. It gives me some support when I’m having a particularly bad day, and warns people around me that I might not be as well as I seem. I find this particularly helpful on public transport – people are SO MUCH NICER to you when you have a walking stick!
So, today. I’m feeling like crap. The inside of my head is fine, but the rest of me is not. It’s like my mind is bursting with energy, but my body can’t keep up. Writing blogs like this stop me from getting depressed about it, but its still pretty frustrating. Especially as I have no idea why I’m feeling bad. I’m learning to tell what triggers a particularly bad spell – eating too big a meal, drinking alcohol, or being too tired – but sometimes I get days like today, when I got out of bed and had to fight the urge to crawl back under the covers, for no real reason that I can tell. I’ve had errands to run today, and I’ve felt like a little old lady hobbling with her stick. I’ve had two major close faints; the first one at home, and the second when out in public, and its horrible.
So what should you know when you meet me? And how can you help?
- Offer me a seat! Sitting down means my heart doesn’t have to work so hard and takes off a lot of the pressure.
- Don’t mention the sweating! On days like today, just standing still is enough to make me break a sweat. It has nothing to do with my weight, or my fitness levels. It is a neurological problem, and horrible for me. I know I’m doing it, and I try to not think about it for the sake of my own embarrassment, but if you see me sweating, chances are its because I’m standing up. Let me sit down, and the sweating pretty much completely stops.
- Walk slowly! On bad days, I really can’t keep up. When I say I need to go slower, again, its not because I’m fat and unfit – it’s because my heart is struggling to cope. Your heart going for a run is my heart going for a gentle stroll.
- Don’t panic! The worst thing that will happen to me is that I’ll pass out, but this is very, very rare. I suffer from frequent ‘near-faints’ where my vision will go funny and I’ll get very dizzy, but I’m lucky not to suffer from complete blackouts (some people with PoTS are more sensitive and do). My fainting spells are often slow and creeping, and more often than not, I can find a seat before I actually faint. But if the worst happens and I do end up blacking out, this really isn’t a big deal. It’s just because my heart can’t pump blood to my brain quickly enough. It’s not a sign of anything more sinister, and I will be fine.
- Give me a glass of water! Keeping hydrated is one of the best things I can do to look after myself. The better hydrated I am, the better my circulation will be. To keep myself ‘well’ I can end up drinking up to 4 litres a day (that’s double the daily adult recommendation). Some days I don’t need so much, and some days I just can’t drink enough. Either way, if I tell you I’m not feeling well, get me some water pronto!
So, in summation, I am not fine. I may look and sound fine, but I am not. My body doesn’t work the way it should, and it puts a lot of pressure on me. I end up very tired, and more often than not a little irritable. But go slow and have some consideration, and the good news is, that I’ll be fine! My condition is completely benign, as in, nothing bad will happen to me if I feel unwell. I’ll just continue feeling unwell, and it will be unpleasant for me. It is not a sign of anything more sinister going on, and I do not need a doctor or an ambulance. To be honest, most doctors have no idea what PoTS is as its so rare – I’m the best at treating myself, and often the best treatment is a sit down and a drink of water.
It really helps me when the people I’m around are aware of the condition. Some days I forget I have it, and some days, like today, I will feel a wretch and one flight of stairs is enough to do me in. But there we go. I’m learning to manage, and I know that in time it will get better and easier.
In the meantime, please don’t hesitate to ask if you have any questions.