Monday, 21 January 2019

I've got a feeling... 🎵 (part 3)

I've experimented with a few ways of presenting this information, but I couldn't find a perfect way so here's what you get!

What does this look like? Well, here are some examples... 
In this first photo, I'm doing a 'cast'. It's pretty much the most basic thing you can do on bars! I thought my feet were together but, well, they just aren't are they?! Maybe my hips aren't level, maybe my shoulders aren't level, maybe my back is twisting, maybe I'm weak down that side, probably all of the above... Another strong possibility is that it's hard to keep your legs in the right place when you can't feel them!

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.

Wednesday, 9 January 2019

I've got a feeling... 🎵 (part 1)

** edit: Click here for a webpage that's good for explaining some of the stuff below. I could rewrite it in my own words, but it's probably easier and more accurate just to redirect you! **

My legs are weird. There are all sorts of things going on in my body, so it's really hard to understand the effect these things have on my legs. They can do certain things, but not others, which is a bit of an enigma which stumps most medics. I wanted to share an analogy I've thought of that explains how I feel about what I feel.
Silly legs

First, though, I wanted to look a bit at why I and others with EDS have these problems - why is it that I have a bit of control over my legs, but not as much as I'd like? Why is it that I can feel pain from within, but not from without? Why can't I feel things that touch my legs, and why can't I feel where they are in space? I have to admit, I haven't found all the answers. I think it'll take a fair bit more research, not only from me but from the scientists out there!

Thursday, 3 January 2019

Number 5 of 'Five Things I'm Proud of in 2018' (These fab folk)

Throughout my childhood, the only film I ever cried at was 'A Little Princess' (which is truly traumatic at any age!). These days, though, I'm completely soppy and whenever I'm happy or proud of someone - even if it isn't someone I know! - I'm in floods!

So, here are some of the people that have made me cry, in a good way, this year. I've had to use some generalisations/fake names for safeguarding reasons and/or to spare certain people embarrassment!

Tuesday, 1 January 2019

Number 4 of 'Five Things I'm Proud of in 2018' (Practising what I preach - a bit...)

I work in a primary school with individuals or small groups of children who, for myriad reasons, need a bit more support than can be offered in the classroom. Whilst every child has a different story, the vast majority need some help with managing behaviour and feelings.
I just caught the second half of this film. It's brilliant!
One of the most important things I've learned is that children know that adults aren't infallible. They know we're not perfect, and they have a keen nose for hypocrisy! All adults who work in a school should model behaviour to which their charges can aspire, but this doesn't mean they need to feign perfection. Kids see through it straight away and they have no respect or patience for it.