Yesterday I was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTs. When you google this illness and read a bit about it, it doesn’t look that bad. And certainly for most people prone to it, they may never get a symptom more serious than a little fainting spell here and there. I haven’t been so lucky. My symptoms have meant that I haven’t been able to work full time for a number of years, and cause me to have wildly inappropriate sleep patterns.
You may have seen me mention on twitter or on this blog that I have Idiopathic Hypersomnia, that is, a tendency to need huge quantities of sleep during the day for an unknown reason. The good news is that my POTs diagnosis means that my hypersomnia is idiopathic no more – it has a cause, and is just a symptom of another underlying problem.
Alongside the POTs, I also seem to have a very mild case of Ehlers-Danlos syndrome, which means I am missing out on a certain protein that helps in holding my body together. This means that some parts of my body, particularly my joints, are very flexible. This is sometimes known as hypermobility. It’s what allows contortionists to do what they do, and maybe, if I had started early enough, I could have been a ballet dancer or a circus performer. As things stand now, I can’t even touch my toes. My hypermobility is more pronounced in some joints than others, and tends to result in bouts of tendinitis, particularly in my ankles.
Another part of me that is too stretchy and flexible is my blood vessels. This is where my heart problems comes from…
Whenever I stand up, my autonomic nervous system struggles. Because of the stretchy blood vessels, my heart needs to pump even harder and faster than it should to keep me going. It means that if I stand up too quickly, or suddenly stop after a period of exercise, that I am prone to faint. Having near faints, or pre-syncope, has become a normal and annoying part of my life for a long while now, so I am thrilled to finally find out what that’s all about!
So with all this extra work that my heart has to do (evident in my permanently high blood pressure and heart rate) I get tired. Not just a little bit tired, but A LOT tired. After any sort of exertion (even a long gentle walk) I end up exhausted, and experience frightening palpitations. Its not pleasant. Even when I am asleep, my body is working overtime just to keep me going. Hence my excessive sleepyness. The most annoying part of this condition is that I’ve ended up in a vicious cycle of inactivity. The less I do, the worse I get, so the less I do…. My body is now in a state of deconditioning. My muscles don’t work like they should, and my heart doesn’t respond how it should either.
So what now?
I’m going to try a non-drug option to get myself moving at first. It’s going to be a long, slow process, but with physio, special exercises, and modifications to how I live at home, I may be able to get some control back over my body. It’s going to take a long, long time. I’m not going to be out jogging any time soon! I’m going to do some yoga and pilates, but I have to be careful with this too. I can’t do any standing postures – everything I do physio wise, has to be done sitting down. At least for now. If I can be sitting down, I should be. This will take away some of the pressure on my heart, and mean that I won’t get as tired in the long run.
I wanted to write about having this condition, firstly to help myself process it (its a life changing diagnosis, and is a chronic, incurable illness), but also because I’m hoping that I can help others out there understand what’s going on. Its an invisible illness that has an extreme, debilitating affect on my life – but it is manageable, with time and effort. My long term plan is to get on top of this. I may never be able to cope with commuting in rush hour to a full-time job, but I’m hoping that one day soon I’ll be able to be functioning seven days a week, instead of whats going on now (I’m only really awake four or five days out of seven).
The best thing about finally being diagnosed is how validating it feels. I am not lazy. I am trying hard enough. I’m not making it up. This is a very real and serious condition, and it takes its toll even on those closest to me. I can’t live a life like regular people – not yet – but hopefully I will get a hold of this and learn how to manage it.