Sunday, 13 January 2019

I've got a feeling... 🎵 (part 2)

In part 1, I attempted to do good science-ing and explain a little bit about what proprioceptors are and what they do. I looked at some of the theories behind why proprioceptors aren't as good in EDS-ers as in the general population, and at some of the effects of that.

This one is going to be rather less sciency, if you like your science to evidence-based and peer-reviewed (don't we all?!). That's because I'm going to attempt to explain something that I don't believe to be fully explicable. Good luck!

The main metaphor I want to use is this: that, for me, feeling things in my body in general and legs in particular, is like listening to the outside world when you're also listening to music on headphones.

As soon as you put on a pair of headphones and start listening to music through them, almost everything that you can hear is what is in your headphones. You can't hear the outside world very well because your hearing is overwhelmed by the sound coming out of the headphones. It's not that you've lost your sense of hearing - after all, you're hearing your music just fine - but nothing from outside can really get through until you take those headphones off.

This is how it feels - the headphones don't just go in the ears; they pump the feeling all over!

The way that I feel my legs is very like this, but there is one subtle but important difference. In the headphones example, the sounds you are hearing still come from outside yourself; outside your head. They're being piped straight into your ears and you might feel really immersed in the music but ultimately the sound is still external.

I suppose a refinement of the headphones analogy would be to say that you have something going in your head which you can hear so vividly that it completely distracts you from being able to hear anything else. I went with headphones because that's an easier one for most people to try out or understand, but the music in your head is a better fit for mapping onto me and my legs.
You see, I do feel things in my legs: I feel pain, all the time. However, I only feel things that have an internal source - so, for example, I feel pain in my nerves, joints, muscles, bone and skin but only if it is somehow coming through from my head. I don't feel pain when something happens externally - for example, if a horse treads on me, if I stub my toe, or if I sprain my ankle.
Occasionally I get a bit of 'crossover' pain where an external incident affects the internal pain, such as when I hurt my knee a few months back falling off the beam and now get a lot of pain in that knee. In 'headphone terms', I think of this as that feeling you get at the end of a track, as the music's fading out before coming back in for the next one - you still can't really hear the outside world properly but you're a bit more aware that it's there. In these situations, though, it takes days or weeks for the 'internal' pain to recognise the 'external' event, and it isn't actually like a bit of the outside world coming in - rather, it's the outside world gradually becoming something my CNS can detect.
This is why my legs are constantly in pain, but I can't feel if you touch my leg - or even if I thwack it hard on something! The pain isn't normally caused by an actual injury; it's just pain that exists in my body all the time. What I don't know is whether or not, if I were able to 'remove the headphones', I would be able to 'hear' the outside world properly - in other words, if I could somehow remove all that extra pain, would I be able to feel useful things again? As I don't think that'll ever be an option I'm not going to spend too long thinking about it!

So, that's kind of how I think about it. I'm not sure I've explained it brilliantly, but that's because it's almost impossible to explain...and if I keep going I don't think I'll get any closer!
Next time I'm going to try and put a distinction between what I can and cannot feel, because I think that will help it all to make a bit more sense. Maybe...

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