Tuesday, 29 November 2016

Cursed left side

I've long known that the left side of my body is worse than the right. My left side has been weaker for years. My POTS-ey heart is on the left side (just!). My left leg is longer than the right which causes all sorts of trouble, especially with the knee, which is worse than the right. My left shoulder is far more hypermobile than the right and particularly damaged. The left hand is fairly useless and I have little co-ordination of the arm. My left eye has better sight, but so far is the only one to have had uveitis. My left ear is less good than the right. Even my infected lymph node was on the left side of my neck!
I can't even sleep on my left side, as that's the painful shoulder...which probably doesn't help reflux...
So, I suppose it isn't surprising that I now have a new diagnosis to add to the Naughty List of the left-hand side of my body: pneumonia! It's not too bad. It was already getting better by the time I saw the doctor. My reflux was worse for the preceding couple of weeks, and in conversations with a nurse friend it seems perfectly credible that I managed to aspirate (essentially breathe some in). It's worst at night, even though I try to sleep propped up, and I've had quite a lot of pain recently so I've been taking sedatives to knock myself out at night. This isn't great news for my stomach and so it's definitely possible I managed to breathe in some stomach acid. I know, right - nice.

Unconfirmed but believable theory. If it happens again I'll go back and ask for more info.
Anyway, just over a week ago I started getting really horrid stabbing pains in my chest/ribs on the left hand side. I get them fairly often so I wasn't too bothered about them, but they were pretty persistent and soon I began to feel tired, shaky and generally under the weather. Last Friday I woke up and could barely move. My left lung was making some wacky noises - it sounded as if I had an accordion down there. I could feel it vibrating too, very low down, right where I got the stabby pains.
Me playing a mini accordion a good few years ago!
That day was pretty grim. I had no appetite and was exhausted by the time I'd had breakfast. I essentially did nothing all day. In the evening, I was trying to force down enough food for me to be able to take my pills later and that made me really miserable. I needed to get up off the sofa and get to bed but I just couldn't. It took a good half hour to make the short journey upstairs with my mum pushing me the whole way (she's smaller than me so I wouldn't let her carry me) and with me crying the whole time. What a wonderful day!
On Saturday I woke up with new noises and feelings in the lung. Same place, but this time it was a really bubbly/popping feeling. I could hear it too, but it wasn't as loud as the bizarre low humming I'd made the day before. I still felt pretty miserable, and so the weekend went on... lots of time indoors feeling a bit sorry for myself and not doing the fun things (namely a showjumping competition on Saturday and vaulting on Sunday) that I'd had planned.
This was the closest I got - watching mustangs fight on the BBC!
Yesterday (Monday) I went to the doctor who found my temperature slightly high (but definitely down from where it had been - good!). My lung felt a bit better and wasn't making too many alarming noises. My pulse was a bit high (even for me!). Anyway, the doctor was lovely and reassured me that he understood I wouldn't have gone in 'just with a cold' and that I wasn't being pathetic. Plus he prescribed more rest and antibiotics, so fingers crossed I'm getting better now.
It's weird not going out and doing stuff. I also broke one of my own rules for the first time ever ('if I'm not in hospital, I go to training'). I wasn't in hospital but I've missed a competition (admittedly not an important one), vaulting, wheeling and a jump lesson. I suppose 'rules are made to be broken', but I still feel a bit disappointed in myself - and I know that's silly but I can't help it! On the plus side I have new unicorn pyjamas so it's not all bad.
I love this.

Friday, 25 November 2016

Getting out of a rut

Over the last few months, I've felt as if I'm stuck in a bit of a rut with wheelchair racing. Because of illness and injury, I haven't been able to train at the intensity I want. The races I have done have been OK but unremarkable, as has the training. I felt as if I've plateaued - I knew the only way to get faster was to get stronger and fitter, but my attempts to do this at the moment are just counter-productive.
A different representation of (some of) what's up with my shoulder!
Fortunately, this week we had a visiting coach with lots of experience of training world class wheelchair racers. I was hoping he might have some useful ideas that would give me a bit of a boost, and I wasn't disappointed!
The first thing that Paul (the coach) did with us all was to have a chat about warming up. Normally, we just head out wherever the session as a whole will be held and do some gentle pushing, followed by some drills, and then some harder pushing. He suggested we do some work outside the chairs first of all. We had a go with trying to move medicine balls quickly and then stop the action quickly too. The weakness and immobility in my left shoulder made it quite hard for me to do this compared to the others but it's definitely something for me to work on as I can see how valuable it will be.
One day!
Next, he had a look at our seating positions. This is something I've not really had a huge amount of input on and as it's pretty vital I was interested to see what he'd suggest. I had a feeling that I needed to move backwards. It's a good job Paul came, because he suggested doing the exact opposite! I had been trying to get to a position where I could reach more of the pushrim, thinking that this would make me faster, but Paul pointed out that I could move the wheels just as fast by using less of the pushrim, which would in turn be less tiring and help me to keep going at a higher intensity for longer. I'm always keen for efficiency and energy-saving so I duly plopped myself out of my chair and immediately set about adjusting it! Even on the tightest setting I could do with being a little further forward so I'm going to investigate some padding to go in.
Once we'd all had our seating positions improved, we headed out to the track (thankfully having missed a downpour). We had a few laps to go round and try and get used to our new positions. I quite liked mine and it did feel as if I was working less but still moving at a good speed.
When I'd done a couple of laps like that Paul asked, 'Can I give you a challenge?' - stupid question! He asked how much attention I paid to the front wheel, to which the honest answer as 'barely any at all'. I tend to watch my left rear wheel so that I know I'm staying nice and close to the inside line but not actually going over it (there's a metal rail that goes around the inside of the track and it's pretty good at bursting tyres or flipping chairs over). Paul set me the task of doing an entire lap with my front wheel on the line between lanes 1 and 2. I expected to find this impossible, but it was a bit easier than I thought it would be. That said, I wasn't pushing very hard because I was so focussed on keeping the wheel in the right place! It was a useful exercise though, and one I'll definitely keep working on.
After that, we got to do some drafting as a group. We've never done that before so it was very exciting! Paul explained that the best way of drafting is to keep your front wheel just to the outside of the right rear wheel of the person in front of you. Some coaches teach you to keep your front wheel between the leader's two rear wheels, but although this means you shave a bit of distance off it does leave you vulnerable to being boxed in during a race. Going round as a group like this was really, really fun! Again, we didn't go really quickly because we were all concentrating on not crashing into each other, but it was nice to have something else to think about (steering) rather than pain. It also made it feel much more sociable!
By the time all of this had happened we'd been there about two hours and it was time for Paul to make the long trip back to Leeds! He was so friendly and helpful and will hopefully come back another time to coach again. I feel really good that I now have some new challenges to work on (namely, watching my front wheel and adapting technique to use less of the push rim) as they are things I can do even though I'm tired and weak of shoulder! I like to have goals and since any that I've been thinking of in terms of racing and events are on hold for the time being it's nice to have other things to work towards.

Tuesday, 22 November 2016


We've all seen the 'take the test' links on Facebook: are you an introvert or an extrovert? I'm pretty sure we've all procrastinated too and taken tests like that one - "Where would the Sorting Hat put you?", "What career should you have", or "What breed of dog are you really?" (why do they say 'really'?!). Anyway, it's via navel-gazing such as this that I came across the term 'ambivert', which describes me down to a tee. An ambivert is someone who isn't wholly an extrovert or an introvert, but has elements of both. I've given it a bit of thought, and I think that a lot of where you sit on the scale can be put down to circumstances of health as well as personality - I used to be far more extroverted before I got more sick.
Bossing my big brother about whilst playing with toy horses, aged about 8.
This is how it feels for me:
  • I like doing things and meeting new people or old friends, but I generally would prefer not to do so. If someone invites me to something, I don't generally want to go even though when I get there I usually have a good time with other people.
  • I'm much more likely to want to get involved in doing something than just meeting up - so invite me riding, or to a road race, or to sing in a choir. There are few things I dread more than meeting up 'for coffee'. 
  • Again, that doesn't mean I don't actually have a good time if I do meet up with you - it just means that my heart isn't always fully in it beforehand!
  • When I'm out in a group, providing I'm not feeling poorly, I'm generally loud and sociable. It doesn't matter if I'm with people I've known for years or who I've never met before - I like chatting.
  • When I'm by myself, I love the peace and quiet. I love that I can do my own thing.
    Harsh but (sometimes) true!
  • FOMO (fear of missing out) is a phenomenon which I do not experience at all. Even if sometimes I get wistful because I'm not doing something that someone else is, I'm usually just relieved that my boring daily routine has not been disrupted.
  • If changes happen that don't affect my routine much I don't mind. If big changes are planned well in advance, I don't mind. If I'm suddenly expected to do something I haven't prepared for, though, then things aren't good! I think that comes down to the fact that pacing is absolutely crucial for me.
  • When I'm with other people, I feel energised (like an extrovert). When I'm at home thinking about being with other people, it makes me feel reeeeeally tired! Similarly, as soon as I get home from being with other people I'm always exhausted.
  • I like to have time to think about my response to things. I prefer emails to facebook messages because I can spend longer thinking about my reply, and because I can see all of the message in one go (this sounds silly but is a big thing for me). I hate the way that Facebook tells people when you've read their message. That makes me feel like I must respond immediately, and I often don't feel able to do that - it actually takes a huge amount of energy for me to read their message, usually to the extent that I don't have the energy to reply too.
  • If I have to communicate in 'real time', I want it to be face to face. That's partly because my hearing isn't good enough for phone calls. On the other hand, if meeting up is too tiring then facebook messenger is the way to go.
  • I hate conversations that don't have fixed end points. I hate it because I get tired and the more tired I get, the more desperate I feel about trying to get away from the situation.
  • Speaking in front of people is not a problem for me. I love talking! However, I also like taking a back seat at times. 
  • My dream evening: either a fun activity that has been planned well in advance (e.g. vaulting or wheeling) or a relaxed, slobby evening in comfy clothes in front of the TV with Rosie on my lap. The latter is my default state when I don't have something more interesting planned!
Who could resist that little face?!
I think it's about managing energy. When I didn't need to think much about that (which is over a decade ago now!) it was easy to spend limitless amounts of time in contact with other people. Now, contact (whether face-to-face or not) is one of the things that I find most tiring. I avoid it because I know it drains me so much. In fact, what sparked this post was me seeing something one of my RDA friends posted on Facebook. It's rare that I see things which I feel sum me up pretty well, but points 3,4, and 5 in this were really on the money!

Sunday, 20 November 2016

Advice for the newly-diagnosed

The other night I had a great riding lesson (despite getting there late after terrible traffic which had me in tears at one point!) and had a really lovely chat with one of my friends who I haven't seen in a while. She was poorly earlier this year and had to go home from university for a bit. Today, I learned that she has been diagnosed with Ehlers-Danlos Syndrome - like me! - and we had a great chat and moan about it. I also said I'd write a guide for people getting to grips with EDS for the first time - and this is it. I've decided not to spend too much time on other diagnoses that come along with EDS - this is all just general stuff.
  1. Getting a diagnosis is often a relief, but it can give way to grief. You need to be prepared for this to hit you hard at some point, so you recognise it and you don't feel bad about feeling bad.
  2. Get organised! You need a file (a big one, or several) to keep stuff safe - appointment cards, letters, therapy information and so on.
  3. If you don't already have one, get an online calendar to use on computer and phone. With lots and lots of appointments each month, it's very easy to lose track.
  4. Have a home therapy kit with everything that can make you feel just a bit better.
  5. Learn to rest. Rest means rest. Rest means not doing anything. Ideally, this means lying down with your eyes closed. Listening to the radio is OK. Watching TV is just about OK. Reading - even if you enjoy it - is activity, not rest. 
  6. Pacing is boring but it's so important. Be honest with yourself. Plan so that you balance each day, each week and each month. This is where your online calendar comes in handy again!
  7. Cut corners when you can. Get a stool to sit down in the shower. Wear comfy clothes. Use ready meals (they're not all expensive).
  8. Mobility aids are there to be used. If a walking stick or crutches or a wheelchair will help you, then go for it. Make them pretty and you'll feel better about it.
  9. Advocate and educate. People don't know enough about EDS - and that includes doctors!
  10. Record your health, daily if possible. Note pain, energy, periods, sickness, headaches, etc.
  11. Do the little things: exercise, see friends, eat well.
  12. Learn about your body. Research your diagnoses; become an 'expert patient'. Don't just believe everything you read online; read peer-reviewed medical papers. They're often available for free.
  13. Record ALL the medication you take, including anything you only take for a short time or that disagrees with you. Have a list of current medication that you can take to appointments. Doctors love it!
  14. Keep a library of physio exercises which work for you (and those that don't). Keep doing the good ones!
  15. Make notes in appointments. Take someone with you if you want. Make notes before appointments so you know what you want to talk about. It's your treatment, your body and your life.
  16. Some people like tight clothes to help hold their joints in place. I find they just force my joints out of place, and loose clothes - or tight clothes that are very thin layers so very flexible - are better because my joints can pop out and in again without being really uncomfortable in between. Everyone's different, so find something that works for you.
  17. Headache? Consider lightweight frames for glasses (these make a huge difference) and tinted lenses. Other tactics: brush your hair; roll your shoulders; stretch your arms, neck and back; eat something; keep hydrated; get fresh air; relax your jaw; rest; shift position; use a hot or cold pack; take medication!
  18. Feeling sick? Get anti-emetics from the doctor (I love buccastem). Keep salt and sugar levels stable. Sit quietly (upright is best), avoid strong smells and loud noises, e comfortable and breathe. Try distraction - listen to the radio or even count to yourself.
  19. Feeling down? Connect - talk to people, virtually or in real life. Make something - write a poem, make a thank you card, draw a picture, invent a song. Watch YouTube videos of silly animals. People watch. Do something to help someone else. Failing all that, sleep!
  20. Too much pain? Pacing, VERY GENTLE exercise (e.g. stretching), rest, medication, be happy (see point 19) and wear splints. Accept and admit limits, excuse yourself from engagements, have a 'pain pack' ready for bad days, and more rest (!) with your body supported.
  21. Too tired? Sorry, it's pacing again. As with pain, when things are bad, you need to be able to call 'Code Red!' and nip it in the bud. Time spent recovering is not time wasted.
  22. Help with dressing: loose clothes with some stretch, forget about socks, loose sports bras, zippy tops instead of pullovers, long t-shirts to keep tummy/back warm, and, finally, a very good friend!
  23. Eating: food that's easy to prepare/cook/eat. Relatively soft food is easy on the wrists and jaw.
  24. Drinking: avoid alcohol! Invest in straws. They're dirt cheap and make drinks much easier to handle without throwing liquid everywhere. Mugs are easier to hold than cups and glasses.
  25. Sleeping: a pillow between the knees is comfier for legs and back. Sleep upright to combat reflux, have the room cold but the bed warm, wear an eye mask, listen to white noise or the radio, and have a cuddly toy!
  26. Working/school: tell people as much as you feel able. They deserve to know and you deserve the support they can give. Expect to receive said help, even if you initially said you didn't need it.
  27. Learn to ask for - and accept - help. People really don't mind.
  28. Keep a sense of humour. EDS isn't much fun to have, but we are quite entertaining people. Learn to laugh at yourself and at the world around you. A sense of humour is vital when you are in hospital. Again. 
  29. Be patient with family and friends, even if they annoy you sometimes. It's really tough being ill all the time, but it's also quite tough looking after someone in that position. Try not to snap. 
  30. My all-time favourite piece of EDS advice I've ever seen (this is real): be flexible. Just gonna leave it at that!

Tuesday, 15 November 2016

Beginner dressage - part 1

Recently I put together some thoughts on riding a dressage test for the first time, aimed at able-bodied beginner riders. In the process, it struck me that there aren't all that many places to find information on this kind of thing online. Most of the articles I found covered things like what to wear, what kind of show to go to, and how to pack your trailer. They were mostly aimed at riders with their own horse, who could practise at home as much as they liked. However, it's getting easier and easier for people to hire a riding school horse for a morning to have a go at their first event. The upsides of this are, obviously, that you don't have to have bought your own horse, but it does curtail your practice time. This means you need to get the best out of every lesson, and you need to know various things that will help you to get any horse to go well - in other words, focussing on what you as the rider can do on any horse, rather than relying on getting to know your own horse well.
So, here we have a guide to beginner dressage for non-horse owners! The aim of this is to introduce ideas which you can start to incorporate into your lessons and that will help you to get higher marks in dressage tests. Part 1, here, aims at explaining some of the basic things you need to know about dressage before you even mount. In Part 2, we'll look at how to achieve the movements required and how to maximise your marks.
First, let's have a look at a sample test. BD tests are subject to copyright but FEI (international) and RDA tests are free to download - so here's an RDA one! They all follow the same format.

As you can see, the movements are listed down the middle (with arena markers to the left hand side), and the number of marks for each movement are also shown. A separate scoresheet is used which has space for the judge's marks and comments.
The first thing to know about is the letters around the outside of the arena. I'm assuming that your first test will be in a 20x40m arena, rather than the 20x60m arena that is used at higher levels. As you can see, there are also 'invisible' (i.e. unmarked) letters along the centre line. You need to know where all of these are because the more you ride to the markers, the higher the score you will receive.
There are a few elements which will feature in every single test, so it's well worth working to get these as good as possible - it will help you every time you compete! Most tests include work in walk, trot and canter, but Intro tests are walk and trot only, and some RDA tests are walk only. In any test, you will have to show your horse moving at all the relevant paces on both reins. (NB - you are 'on the right rein' when your right hand is to the inside of the school, and vice versa.)
In order to 'change the rein' (i.e., change from moving clockwise around the school to anticlockwise, and vice versa), you will have to cut across the school. This is performed from one marker to another, and the more accurately you ride to the markers, the better your score will be. Below you can find some of the ways in which you can change the rein. FXH/HXF is an example of a long diagonal; BK/KB is a short diagonal; AXC/CXA is the centre line; and BXE/EXB is across the width of the school.
Tests include figures such as circles, figures of eight and serpentines. At the lower levels, circles are the most common. Circles can be of any size, but in order to make them appear neat in relation to the markers, they are usually of 20m or 10m diameter to begin with. A 20m circle uses half of the school. It can be performed at either end (at A or C) or across the middle (touching the track at B and E).
10m circles can be performed pretty much anywhere, but most will touch the track at least once. Generally, a 10m circle will touch the centre line (AXC/CXA) at some point.
In each test you will have to ride down the centre line at the beginning and the end. The judge sits at C, so you will ride in from A towards C. If you are lucky, and your test is held at quite a big venue, the initial turn down the centre line will be easy, because you will start outside the arena, and can therefore turn well before the arena so that you come in straight at A. At smaller venues, you're more likely to be riding in the arena before the test actually begins, meaning you'll just have to turn at A as you would normally. In either case, the final ride down the centre line (where the test finishes) will be done from the arena, so it's important to know how to do it well. There'll be more on this in part 2, but suffice to say (for now!) that it's far better to start your turn early and to aim for the centre line by about D than to ride to A, then turn, and be to the FBM side of the school and have to wiggle your way back.
With the caveat that a BD Intro test and some RDA tests will not use canter or, sometimes, trot, these are the paces you will have to demonstrate in your dressage test:
When you first look at these it can be strange to see 'medium' walk, and 'working' canter (although you might already be familiar with working trot). These labels just mean that you don't need to think about collection or extension: just think about walk, trot and canter as you would normally. In higher level tests you are asked to show, for example, medium trot, which is where the horse stretches his legs further in trot but maintains a rhythm, thereby covering more ground. If you watch Olympic dressage, you'll see extended trot all the way down to piaffe (which is pretty much trotting on the spot) - these are extreme examples of extension and collection. They are difficult to perform which is why they aren't asked for in beginner tests, and why we can just relax and focus on getting a good basic pace! The key thing is not to worry about 'medium' and 'working' for now - the judge just needs to see that the horse's legs are moving in the correct sequence, and that the pace is as rhythmic, balanced and forward-going-whilst-being-controlled (!) as possible.
The free walk on a long rein is a different kettle of fish. This is usually an excellent chance to pick up some scores, because it is so highly prized that many tests call for the free walk score to be doubled. If you do a shoddy free walk, this means you might get 4 or 5 out of 10, doubling to 8 or 10. If you do a stunning free walk, you could get 7 or 8, doubling to 14 or 16 - so it's worth paying attention to it! The essence of the free walk is that you should let the reins lengthen and the horse should put his head down to seek the contact. The topline of the horse should be relaxed but he must still step forward really purposefully. More on how to achieve this next time!
This is obviously after the test has finished - you shouldn't quite be relaxed enough to wave during the test! - but it's still a lovely example of a free walk.
You also need to know about the two types of marks you get: firstly, a mark for each movement (these are obvious when you look at a test sheet) and secondly, collectives. Collectives are given at the end (or they should be!) when the judge has seen your entire test. They are a reflection of how well you rode and how good your horse was throughout the test - and, obviously, the latter depends largely on the former, although a good horse will make things much easier! They aren't without controversy, but I'm not going to go into all that here (if you want to know what some of the arguments are, you can find them here). Suffice to say that collectives are important, because if you tie with another competitor they will look to see who has the higher collective score; and that rider will win.
Collectives are listed at the bottom of your test sheet, as they can vary a little. However, they're all pretty much about the same ideas. Most of it is about the horse: rhythm, regularity, consistency of tempo, freedom, submission to the rider's aids and acceptance of the bridle, suppleness, impulsion (oomph!), contact, and so on. They also look at your position and the correctness and effectiveness of your aids: so, for example, if you flap your hands and legs around or give your horse mixed messages you'll lose marks, but if you sit nicely and quietly and work in harmony with the horse you score higher marks. Makes sense, right?

Not ideal!
Anyway, that's a whistlestop tour of the basics of a dressage test. Next time I'll write about how to make it easier to do well. I'm currently at an RDA event in Cheltenham so I'll have to recover from that first!