Some RDA stuff

Since last time...

Things have moved on a little since last time I wrote. There have been some good things and some bad things so I'll try to do them all justice.

Rowing-wise (since this blog is called Bendy Rower, after all) I still haven't got much further. I've done a bit of coxing, which has been fun, but I haven't done any rowing because my heart hasn't been up to it. I'm now focussing on some coxing talks that I'm giving for one of my favourite boat clubs - they're trying to train the rowers to do some coxing too, which is a fantastic thing both for the club and for the rowers themselves, whether they realise this or not! We've had one workshop so far and it was very relaxed. It really helped that there were a few other experienced coxes there who could share their stories too. I'm having to take some time off coxing so I'm looking forward to doing more workshops so I can carry on working with the club.

"And this fraction represents the perfect rudder on-rudder off ratio."

Riding is a bit of a mixed bag too. I've enjoyed going to the sessions (although I did have a terrible session last week where I didn't have the right reins and simply could not control the horse at all!). At the moment we're working towards a dressage competition next weekend, and now that I've memorised the test it's time to work on making it more accurate and improving the way in which the horse is moving - how I respond to him, and how he responds to me.

Last night we had a good session where the instructor taught me some tricks to get him to relax a bit more and to listen to me more. I got home and made a long list of all that I could remember of what she had told me. A lot of them were things that should be obvious to me, but which I need to be reminded about. One of those things is to let my left arm (which is the one I don't use) come forwards when it's my outside arm, instead of letting it hang by my side or behind my leg. It helps me to get the correct bend on that rein, which also helps the horse to bend correctly. To help with the bend, I also need to be better at pushing him into the corners with my inside leg. Luckily, my better leg is my right leg, so I can team up my worse arm with my better leg, and my worse leg with my better arm. If my left arm and right leg were both bad I'd really struggle on the right rein!

Struggling on that right rein...

I'm also learning to trust him a bit more in the walk - he tends to walk quite quickly and is always more keen to go than to stop, so I had been holding the bar of the reins quite tightly. By loosening my arm and my grip on the bar, and letting him have a bit more of a stretch, he relaxes into a much better walk. Another thing I'm working on is keeping him straight on downward transitions (e.g. canter-trot; trot-walk; walk-halt). The first downward transition we have is trot-halt, which can be quite abrupt. I need to prepare him better (= earlier!) and make sure that, even though I want him to stop, I close my legs around as much as I can so that he stays straight.

The idea is to achieve a nice square halt.

Although I've enjoyed working towards this test, at the moment I'm not even sure that I'll be able to compete. This is because my grading hasn't come through from the RDA Headquarters. I don't fully understand the situation, but last night one of the ladies who runs my group rang them up to see what was happening and they said that I couldn't be graded. As far as the people who run my group are concerned, I should be able to be graded - they know I use crutches/a wheelchair; they know I have a blue badge; they know I am classified as a para-rower (and the different sports should use roughly the same system); and they know that there are certain things I really struggle with on a horse (holding a rein in my left hand, for instance). I haven't written anything about the grading process until now, because I felt utterly demoralised by it, but now that I have at least heard something from them (although not directly - I would have hoped they would have let me know, instead of just waiting to be asked...) I thought I would write about it.

My classification for rowing was generally a positive experience. There were three people present - two physios (one of whom was learning the ropes) and a representative from British Rowing. They did various tests on the bench/bed and then watched me on a rowing machine. They knew a fair bit about my condition, but also acknowledged that it's quite uncommon and so weren't afraid to ask me if there was anything else that I wanted to mention, or if there were any reason why I would struggle with specific movements. They explained the system to me and explained what category I was being placed into. I went away feeling positive about the whole thing, and excited to start training.

It's really hard to find an image for this moment that doesn't involve 'This girl can'...so, I went with this one.

My riding grading experience was basically the complete opposite of this experience. My initial contact with the physiotherapist who carried out the grading was quite confusing, as she said that cases of Ehlers-Danlos Synrome were hard to grade. Word for word (with uncorrected spelling/punctuation!), this is what she told me in an email:

"Hi lizzie the eds cases are really hard to grade but happy to do for
you. As eds is a hot tpoic in classification now it has to be a
specialist letter I believe"

So anyway, we arranged for her to come round to my house a bit before Christmas and do the grading. The first thing she wanted was my letter of diagnosis - so far, so good, I had that! I also had copies of the MRIs I had done when I fractured my spine in 2003. They showed the compressed/slipped discs and fractured vertebrae. Now, I'm quite aware that by 2014 an MRI of my spine would probably have looked pretty different, and I never tried to pretend that it was a more recent scan or that my spine would still look like that. The point of showing the scans was to demonstrate one of the many injuries that I have had associated with EDS, and to show the cause of the back pain and muscle spasm which I still experience as a result of the fracture and mis-management of the condition in the months following the accident. The physiotherapist dismissed them saying that they were irrelevant as they were so out of date. As I had already said that I knew the bone and cartilage would look different now, I had hoped that she might at least use them of evidence as to why I have had severe back pain every day since the accident, and why I find it hard to use my legs or to sit up unsupported for very long.

Pun-tastic.

The next thing to happen was that I was given a lengthy talking-to as to how grading worked. However, this didn't answer any of the questions I had (what are the categories, how long does it take, what is involved, what if something really hurts, what if I don't understand what you want me to do, etc) but rather to inform me that she would take a very dim view of anybody attempting to cheat the system. I was told that many people faked disabilities in order to try and gain sponsorship money and to compete in the Paralympics. In the physiotherapist's view, it was not her job to grade honest people but to weed out those trying to cheat. She explained to me that pain is not a classifiable symptom (since it cannot be objectively measured - although other things can...apparently).

Pain is one of the biggest things that stops people from being able to do what they want to do. If your pain is severe, you simply do not have strength or range of movement. I would have thought this is obvious - if you break your ankle, you cannot stand on it or move it because it is too painful. Breaking an ankle isn't a disability, because it heals, but having that kind of pain which never heals surely is, and surely can be measured by how much movement and/or strength you can manage.

 
After leaving me in no doubt that any attempt to exaggerate my symptoms would be utterly transparent and despicable, the testing began. Before I describe this, I would like to point out at this juncture that if I had a choice in matters I would choose not to have EDS at all. I would choose to be able to move about like ordinary people; to be able to run; to be able to plan a day's excursion without factoring in rest time and wondering if I'll physically be able to get from one place to another. Life would be much easier if I didn't have to worry about all that. I would far sooner be in that position than be able to be graded for para-sport. Surely it is better to be fit and healthy and to lead a normal life doing able-bodied sport than to have an incurable disease which attacks every part of your body?

So, the testing. There are three categories to test - range of motion, strength and co-ordination. My range of motion is always going to be good, because I am hypermobile - it's basically a defining feature of EDS! She tested for the Beighton criteria, which I mentioned in my last post, and found that I was 9/9. This means that all the joints tested bend too far and are unhealthy. Unfortunately, there is nothing in the system for joints that move too much, but only for joints that don't move enough, so although my joints cannot stand much pressure without subluxing/dislocating I am classed as normal. Go figure...

One point for hands flat on the ground, legs straight, and for each knee/elbow that bends backwards, for each little finger that bends back 90 degrees (all of my fingers do), and for each thumb bending down to touch the wrist.

Strength was what we spent most time on. My strength in my left arm and left leg is pretty poor. This is still being investigated to see if there is some reason other than EDS behind this. My strength in my right leg isn't great, but it is better than my left leg. My right arm is reasonably good, and, despite the pain and spasm in my back, my core strength is relatively good (benefits of being a singer!). Strength is given a score from 1-5. 5 is normal (i.e. able-bodied) and 1 is severely disabled. Most of my scores were 3 or 4. I don't know much about how this relates to other people, but when I told people this at my RDA group they were all very surprised, and thought I should have been lower. Interestingly, another girl at the group was also graded by this physiotherapist, and was assigned to Grade 3. The group appealed, and a subsequent set of physios found her to be Grade 2. At the National Championships, the original physio wanted to grade her again, arguing that she was too able for Grade 2. This physio put her at Grade 3 again, but was over-ruled by eight (!) other physios saying that she was Grade 2. Another 'go figure' moment...

When it came to co-ordination, the physio explained that she wasn't going to test these things because EDS did not cause problems with co-ordination. Now, I know this to be a load of nonsense, as my co-ordination is dreadful. Until a year and a bit ago, I simply thought I was clumsy, but then a specialist physio at The Hypermobility Unit taught me that, in hypermobile patients, proprioception (the sense of where your body parts are) is extremely poor, because the brain does not get accurate feedback from the nerves. This is why it's easy to fall over and difficult to perform any task with any degree of finesse! To quote from this article, "Such a lack of proprioception, that likely affects multiple body segments, impairs balance and posture" - and balance and posture are pretty important on a horse. Poor proprioception also makes it hard to co-ordinate your movements, so the complex collection of commands needed to communicate with the horse is even harder to perform. Anyway, none of this is relevant because it didn't get tested.

How I imagine the horse must feel with each of my random movements.

After the testing had been completed, the physiotherapist had a stern word with me about making stuff up. She told me to read a book which, she thought, would help me to realise that all my symptoms were in my head. I have bought the book and I will read it, but not because I'm making stuff up. I will read it because the person I want to get rid of in my head is not one that is saying, 'pretend to be disabled', but rather one that says, 'don't bother fighting. Don't bother trying. It's just not worth it. Just don't do anything.'

After she left I was really fed up and felt dreadful. I was angry that I had been accused of making stuff up, and also upset that, as a result, I probably wouldn't get a grading (she writes a letter to accompany the scores). Mostly, I felt like giving up. Learning to deal with EDS has meant learning to accept that the things I used to enjoy doing are now no longer necessarily possible for me - and things that I enjoy now may not be possible in the future. I had already experienced that with running (I used to love going for a run). Over October-December last year, I experienced it with rowing, and I felt powerless and rudderless (no pun intended) as a result. I felt that things were OK as long as I could have riding - but now it felt that I couldn't have that either. Sure, I could still go along to the group and have fun in the sessions, but I want more than that. I don't want sponsorship or to ride in the Paralympics (although if I were offered the chance I wouldn't say no!). I simply want something to work towards, at whatever level is possible. Until I have a grading, I don't have that. I feel terrible about not being able to row. I hate it. I hate not being able to do things for myself. The one thing that I thought I could still do and enjoy and get halfway good at is now being taken away as well - and that hurts.

If only I were strong enough to use a vacuum cleaner my life would have so much more meaning.

You might wonder if there's anything in life besides rowing and riding. Of course there is! But at the moment I can't do work (I'm about to start a period of time away from my studies to try and rest and recover a bit, and get my heart under control). I can't play musical instruments, which was the only other thing I was any good at. I can't cox because I'm not safe to be in a boat. I can't sing well because I'm so distracted by pain when I stand that I can barely even hear. I can't drive. I can't help much around the flat. I can't walk far and I can't push my wheelchair far either. Riding was the one thing that gave me a sense of freedom and a sense of something that I felt I could realistially achieve. I can still ride, but I want something to aim towards - surely I'm not unusual in that?

Now then, I was going to talk about wheelchair racing in this post too, but I think I'll save that for a separate one so we can have something more positive. Not that I'm any good at it - but I am enjoying it!

So, to finish on a positive note - everyone at my RDA group has been extremely supportive and they are fighting to get me graded. They're also still teaching me and pushing me to work hard and to improve. Hopefully I will do the competition next week, even if I do it for the riding equivalent of 'time only'. Hearing from RDA HQ is a setback but it isn't the end. Just have to keep on keeping on!

Keep plugging on.