POTS problems - bad day.

Today has not been a great day. I have a slight cold, which shouldn't really be too problematic in itself, but it has affected my POTS quite badly. POTS, or Postural Orthostatic Tachycardia Syndrome, is defined medically as 'the failure of the peripheral vascular system to appropriately vasoconstrict under orthostatic stress' (you can read more from the person who wrote that definition here). POTS is a form of dysautonomia: a malfunction of the autonomic system, which we rely on to control the 'automatic' functions of the body. Patients with POTS experience enormous problems in keeping their heart rate (and sometimes blood pressure) at a steady level whilst going about every day life.

I find that the extent to which POTS affects me does fluctuate from day to day, and from week to week. Recently, I hadn't been too badly affected: I always have to make sure that I don't stand up too quickly, and I'm completely unable to do anything that involves lots of changing head heights or posture, such as burpees or squat jumps (what a shame!), but I have generally been feeling OK from the POTS point of view. However, the beginnings of a cold - which really is very minor! - have been enough to make my POTS much worse.

Not these kinds of pots.

This is a list of things which have made me black out or feel very dizzy today:
1) Sitting in my wheelchair, and tilting my head back to look up.
2) Standing up slowly - but not slowly enough - to walk to the kitchen.
3) Rowing for more than a couple of minutes at a time (and, as I got further through my session, for more than 20 or 30 seconds at a time)
4) Having a warm but not hot shower (hot really would have made me collapse in a heap!).
5) Going more than an hour without eating something salty (helped a bit by having some hula hoops, yummy).
6) Blowing my nose!

The most frustrating thing was how badly my POTS affected me in the boat today. I only intended to have a reasonably light session anyway, but there was a point when I almost felt quite panicky, because I genuinely didn't think I would be able to make it back to the boat house at the rate of progress I was making (especially as there was A LOT of wind and not much of it was a tail wind!). I found that I could barely row for a couple of minutes without having to stop, and after a while this had gone down to about 20-30 seconds, which was really frustrating. I really wanted to push myself through it, but I knew that that was actually just really dangerous (and wouldn't help). The annoying thing was that I deliberately chose to go out in the boat instead of to train on the erg - which would have been safer - because I wanted to get fresh air to try and wake myself up a bit.

I felt a bit a lot like this.

Tomorrow I do have the boat booked but if I'm feeling anything like today then I might have to see whether erging, weights or a rest would be better. I'm now very aware that it's less than two weeks until Nat Champs, and I want to be training hard. If I just had a cold, I feel that I would be able to push through it a bit more, but when my heart rate is really high when I'm just sitting still, and when I start blacking out just by moving my head, then doing any meaningful training is just impossible. I know I need to accept that days like today happen, and that I should just concentrate on doing whatever will make me healthy in time for Nat Champs. Sometimes, though, it's a really hard thing to accept. My condition is so unpredictable, but one thing I do know is that I will be feeling like this for a while now, and I just want it to calm down in time for the 19th October. At least on days when I really cannot get out of bed I know I don't have the option of training at all - but on a day when I can get up and move about, albeit with difficulty, I feel that I should be pushing myself a bit harder. It's a really hard balance to get right.

I'm aware that this doesn't sound tremendously positive. I wouldn't say that I feel as bad as this post might make it sound. I am frustrated, certainly, and annoyed at myself (although I can't really explain why). However, I am pleased that despite feeling pretty dreadful I still went out in a boat and worked on some technical points. I'm also quite pleased that I used the opportunity of needing to sit down a lot to do quite a lot of university work. I know that today isn't as bad as it gets, but I also know that I often have much better days. I'm still confident that I can go on to achieve more, and that I will feel better than this some days. If I'm honest, I am afraid that I am gradually getting worse and worse. However, the stubbornness within me is as strong as ever.

It's a hill - get over it.

I struggled today, physically and mentally. It did kind of help that there was no-one around to help me (the weather was bad, so the river was empty except from one other sculler, who I passed on his way home quite early on) and I had to battle against the elements to get home - I had no choice, so I just had to keep on pushing and get myself there, however badly I rowed and however long it took. I think it's important that I have moments of mental weakness as well as physical weakness. No-one is genuinely strong all the time - we might say we are, but we all have doubts about our capabilities; about whether we're 'doing the right thing' or not; about whether we shouldn't just stay inside and read a book. Today, on the reach, battling against head winds, I seriously doubted whether or not I should just give up rowing. Physically, I'm struggling a lot more now than I was a year ago, and today in particular compounded my 'give up now' sense. But what's the point in trying the rest of the time if I give in after one rough patch? Why give up now, when I haven't achieved what I want to yet? More importantly, why give up now, before I've even attempted to achieve what I'm aiming for? I can't do that to myself, however tempting it is. I would rather be the slowest rower at Nat Champs and at least say that I tried than be the one who pulls out because she thought she couldn't do it.

EDS is a really tough illness. It affects so much of your body, and you can't predict what's going to happen next. It stops you from eating properly (and fuelling yourself is pretty important for rowers!). It stops you from pumping blood properly (important in quite a lot of sports, actually...). It stops you from moving properly (you get the idea). But it also makes you tired; so bone-achingly tired that your mind is numbed by fatigue because it is so tired of registering the pain. When your mind starts to suffer, you just lose the will to fight a bit, and depression starts to take over. The voice inside you that said 'just keep going!' begins to be drowned out by the voices telling you not to bother; that there's no point trying; that you'd be better if you didn't draw attention to yourself; that you're a failure. Sooner or later, you wonder whether you're fighting a mental illness or a physical one, but of course it's both.

This - courtesy of stickmancommunications.co.uk

If you have a serious physical illness, then sooner or later you have to face the fact that it takes its toll emotionally. Sometimes that takes over your entire waking (and sometimes sleeping) existence. Other times it creeps up on you when you don't expect it. Today, before feeling my really depressed moment, I had sat calmly in my boat, alone on the river, and looked up at the first bit of slightly bright sky I'd seen all day. There was not another person in sight - not on the river, or the towpath, or in the meadows to one side where people walk their dogs. I was completely alone, but I felt so free - free, because I was in a boat, which is where I can move smoothly and with relative ease; free, because I was out here by myself and in my element. This was not five minutes before suddenly feeling hopeless, scared, useless and unworthy. The negative feeling came from nowhere, and I wasn't able to return to that state of wonder, liberty and fulfillment which I had experienced just a few minutes before.

I'm hoping that I will now be able to quash the negative feeling in just the same way that it got rid of my positive feeling. The thing is that however positive I want to be, and however many inspirational comments I read, I am all too aware that sometimes there is such a thing as 'can't', and that the impressive but ultimately misguided folk who say that there isn't haven't yet tried to row at race pace for more than 30 seconds when 30 seconds at normal rate is enough to black out. I am only in control of so much: I can control the work I do in a boat (as far as I can control my own limbs); I can control, to an extent, my attitude towards the work, but I cannot control my health. I can do as much as possible - which is partly why I row - but I cannot make myself healthy when even medical professionals draw a blank.

So, how to conclude? Today was tough. Tomorrow will be tough. But, so far, it isn't tough enough to stop me completely. I don't want to end on something which is unrealistically positive, because to be honest right now I'm not feeling positive, and I think it would be dishonest of me to try and be all inspirational by saying that I feel great and I'm going to keep fighting. That is because the honest truth is that I feel terrible, but I will keep fighting. I hope that's good enough for now.