Tag: 2020

The Autonomic Nervous System, and the dysfunction of it (well even the function of it really) is something that until fairly recently I didn’t know much about. In fact it’s safe to say I am well and truly still learning about it and how it affects my body.

You see, Postural Tachycardia Syndrome (PoTS) is a form of autonomic dysfunction, so I’ve been reading a little about it and learning. I don’t feel like I know a lot about the subject, in fact I know I don’t. I’ve got more appointments coming up to find out more about what is going on with my autonomic nervous system and how it is (or should that be isn’t?) working. But for the time being, in the aim of raising a little awareness about it I can give you a little overview of what I do know.

The Autonomic Nervous System is one most people do not have to think about in their day to day lives, it does everything necessary automatically. You stand up, the autonomic nervous system automatically adjusts everything required to cope with gravity, it adjusts your blood pressure and heart rate, dilates blood vessels to push the blood back up to your heart, directs the blood to where it is necessary and more. And it’s not just changes in position that it adjusts those for; changes in temperature, changes in hormones, during digestion and more, all require the autonomic nervous system to do it’s job. It also controls sweating, temperature and more.

With autonomic dysfunction, these things don’t necessarily happen. So for example, when I stand up, or even sit with my feet down on the floor (like you usually would on a chair) my blood pools in my feet, turning them a blue/purple colour and causing them to swell. I get dizzy and sometimes faint when changing position because my blood pressure drops. If I eat a big meal, I feel faint afterwards while my body digests it.

If I enter somewhere hot I get very dizzy and sometimes faint; so those luxurious air conditioned shops in summer, or the really warm ones in winter, come with consequences for me – on exiting an air conditioned shop in a hot summer I feel very faint as my body adjusts to the sudden temperature change, and the same thing happens on entering a heated shop during a cold winter.

It can be freezing cold but I can feel warm, and it can be boiling hot but I can feel frozen. I can suddenly get very hot which in turn causes me to feel faint. I frequently sweat buckets despite not actually being that hot; I’ve even had to explain to consultants why my summer vest top is absolutely drenched in sweat at appointments even though it’s winter and it’s not that hot in the hospital!

I’m still learning exactly what is wrong with my autonomic nervous system, tests for Postural Tachycardia Syndrome have revealed not only what was expected, but also other abnormalities which need to be clarified with another specialist. As I learn more about autonomic dysfunction and the effects it is having on my life – I’m still not sure what symptoms are caused by what yet – I will post more about it.

So in recent months things have changed quite drastically for me, not only has there been the number of hospital appointments, but also things at home have changed. The usual routine, the amount of help available, it has all changed.

I still live with my parents, one has always worked, the other has always been around to help me out, keep the house and the like. But now that’s changed. Don’t get me wrong they are both still here for me as much as they possibly can be, and they do an amazing job, given everything they have going on, but it means I am spending more time on my own in the house.

And truth be told I’m finding it a bit hard. Sure it’s only a for a few hours each day that I’m alone, most of the time, however it’s a few hours where I’m restricted to staying downstairs (admittedly mainly through my lack of confidence on the stairs), to find ways to pass the time which always seems to go slowly with no one else in the house, and generally keep myself entertained.

It has also resulted in me doing more around the house. Granted it’s still not a lot in comparison with what a healthy person would do, and it’s only a tiny bit of the housework that has to be done. But it’s a big deal and has quite an impact on how much else I can do.

I’m doing my best to pace it all out and make it manageable with my physiotherapy routine, but obviously hospital appointments blow it all out.

I’m also finding I’m getting lonely not having anyone to chat to during those times. I used to long for the times I was home alone as it meant I could get some peace and quiet and much needed rest, or catch up on shows I like that no one else does, but now it seems there’s too much of it, or perhaps it’s more that I never know how long it’ll be and thus can’t plan things to fill the time as the things I like to watch on TV and DVD aren’t what my parents like, and if I start an episode I hate switching it off knowing I’ll have to go back to the beginning of the episode next time I get a chance to watch it because I won’t remember what happened!

Perhaps I’m just someone who can’t be pleased? But life at the moment is really difficult (and I’m not just referring to my health when I say that), and spending so much time on my own I want to keep myself busy in order not to think about it too much. Believe me, it is possible to have too much time to think. But I can’t always keep myself busy without overdoing things, and I don’t want to do that, I know that slow and steady is the way to manage all my conditions.

I’m sure, as always I’ll find a way through and adjust to the changes which have happened. It’s just going to take a bit of time. Learning how to balance everything else that is happening on top of the physiotherapy routine, and hospital appointments when my energy levels aren’t exactly at their highest was bound to throw up some challenges along the way. It’s just proving a little more difficult than I expected it to be. And lonelier too.

I meant to write an update back at the beginning of December after my appointment then but hospital things spiralled and combined with Christmas preparations I just didn’t get a chance.

So, back then things with physiotherapy were going very well; I was managing to complete the gentle exercises twice a day, and had managed to increase some of them to five reps each. My physiotherapist was really pleased with me. And we talked about maybe increasing a little bit more, adding in an extra one to help my shoulders.

However, since then I have had a number of viruses, which have meant some days I’ve been unable to do any physiotherapy, while others I’ve only managed half of what I was previously able to do. I have gradually built it up again as I have recovered from these viruses, only for another one to strike and ending up back at square one again. But we will get there.

Now I know I’ve been saying how fantastic and understanding my physiotherapist is, but I couldn’t help but feel a little apprehensive about the latest appointment; it was the first time I was attending a physiotherapy appointment having not been able to keep up with what had been suggested. And while I know I’d been told it was ok for me to reduce the amount I did during bad days/patches, I was still worried I’d be told off for reducing it so much.

But alas I needn’t have feared that! In keeping with my experience thus far with this physiotherapist, she was brilliant yet again and told me I’d done really well at managing my physiotherapy exercises while more unwell than normal! I’d done the right thing in reducing them, and the fact that I’d continued at a reduced level rather than stopping them entirely for days, had allowed me to bounce back to my “normal” level more quickly.

I have to admit it felt rather strange being praised for having reduced my activity level when feeling worse than usual, after so many years of being told to keep trying to do more but not push through symptoms. (I still don’t know what that really means!) So for now I’m continuing as I was, slowly building back up with the aim of increasing the number of reps for each exercise up to 5, when I feel ready.

I can’t explain how reassuring it is to be told that I’ve shown I know how to manage my physiotherapy and fatigue levels effectively, reducing and increasing the exercises as my symptoms allow. For once I finally feel like I’m doing something right in the eyes of the medical profession, and it’s not being detrimental to my health either.