Tuesday, 28 May 2019

EDS-ers get a bit cross

Yesterday, Ehlers-Danlos Support UK put out a post which was probably intended to be helpful and supportive, but which received an almost instant backlash from an awful lot of miffed EDS sufferers.

The post was saying that, whilst expert medical care is vital for EDS patients, there's also an awful lot that we can do ourselves to manage our condition. You can read it yourself:

Well, you could, before it got deleted - but fortunately I have a screen shot! Here's what it said:

Friday, 19 April 2019

RDA Showjumping Regional Qualifier 2019

Yesterday we made the trip to Penniwells RDA in Elstree for an inter-regional showjumping competition which also acted as our regional qualifier for the Nationals in July. I was riding in the Level 4 class on Boysie and, to continue with the theme of the last year, I had some misgivings!

The aforementioned misgivings...
The main problem was that I hadn't actually jumped a course of fences since last year at Hartpury. Then, I was on Danny, and I didn't really jump the course so much as cling on and survive it by the skin of my teeth. Before that, I jumped Rolo for the level 4 qualifying round and my coach's training as a level 4 coach, the latter of which included a fairly impressive cartwheeling fall which tore the meniscus in my knee and which, because poor Rolo inadvertently kicked me, made all of my right lower leg a really gross colour for months (oh, and I got an ice burn on it which was foolish, but it was nonetheless intriguing to see a huge chunk of flesh turn into a solid, frozen block - not for the squeamish!).
My little legs waving in the air...poor Rolo!

Saturday, 16 March 2019

Jess the Courageous

Today I was present for one of the greatest acts of courage I've seen in a long, long while.

Jess is one of the vaulters I coach on a Saturday. She's only been coming for quite a short while - a few months - but in that time she's achieved a lot! She's not much taller than our big vaulting horse's legs, but that hasn't stopped her from getting up there every week and learning new skills.
Sometimes Jess gets nervous about things, which is understandable really, when you consider that I'm asking a small person to do some fairly ridiculous things on a large horse! She found it hard to hang her weight off the side of the horse and transfer onto the neck - but she did it. She found it hard to move back from the neck to his back - but she did it. She found it hard to be one of three people on the horse at the same time - but she did it. Funnily enough, she didn't find it very hard to kneel on his back in trot and let go!

Saturday, 9 February 2019

After the op

After getting warmed up in Recovery I was taken back to the ward and tried to get a bit of food and drink down. I only really fancied toast but my mouth was so dry and my throat was sore so it took me aaaaaaages to eat it! The physio came round and ran through some exercises. Because of the nerve block, I wasn't able to do much, but the effort of standing up and then accidentally letting my arm swing around made me go very green... I laid down again and by the time they could see my blood pressure I was feeling a lot better, but it was still rather low - it reminded me of having the tilt table test done!
POTS man courtesy of stickmancommunications.co.uk

The only other thing of note that happened was that, as I leant forwards for some reason, I started choking. It felt as if there was a big lump of phlegm caught at the back of my mouth (I know, lovely!) but I couldn't cough it up. I mentioned this to one of the nurses but given that throat problems are very common after being intubated for surgery it wasn't a major concern for her or me. I mostly felt bad for having made such a revolting noise on the ward!

My shoulder op

On Tuesday I had surgery on my left shoulder to repair some of the damage done by an injury two and a half years ago (click here and scroll down to under the photo of me stretching in straddle). 
Two and a half years ago - English Champs 2016
This injury occurred when I did a (deliberate!) forward roll off the horse, but got my left hand stuck in the handle. The horse was big so my arm was up at its farthest reach, so as he moved and I didn’t there was a ‘pop’ and my acromioclavicular joint (shoulder blade/collar bone) pulled apart. It’s no coincidence that the left arm is the one that has everything happen to it - this particular injury was caused by the fact that I can’t control my left hand properly so couldn’t let go of the handle properly. Anyway, you live and learn, and now I just try not to hold on with that hand!

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.