Sunday, 24 September 2017

[Some of] what I wish I could say but can only write

I'm sorry. I'm sorry that sometimes I can't look at you, hear you, talk to you, listen to you, touch you or even be near you.

I'm sorry I can't explain how I'm feeling or what's wrong in person. I'm sorry it has to be here.

I'm sorry it looks like I don't care and I'm not trying. I do care and I am trying, but it's so very, very difficult that even all my caring and all my trying doesn't make it work.

The first and most important thing is that I'm sorry.

The second thing is all of this:

Everything hurts. My bones burn. My muscles scream. My joints feel rend apart. My skin aches. My head throbs. My eyes are weak. My ears jump inside. My stomach spirals. My gut grinds. My throat rasps and I feel the air scraping down to my lungs.

Every tiny bit of input has the potential to overwhelm me completely. Some input is necessary to fend off insanity, but I have to control it myself. I have to be in charge of what touches me and of what is fed to my brain through my eyes and ears. When I'm not in control, I fall apart and so does the act. The tiniest things count as a loss of control - the merest touch, wobble, loud noise, word, attempt at contact - all of those things make me fall apart.

Even seeing something painful can do it, but it's impossible to define 'painful' - it's not just bright colours or flashing lights. Those things can spark physical pain but this can be anything, and it's usually anything that my eye muscles have to work harder to perceive. Sometimes it's easier just to look down. It's the only way to alleviate the pulsating pain across my eyelids.

The third part is this:

Pain takes energy. I am so utterly exhausted from pain: how constant it is; how severe it is; how much of me it covers; the vast plethora of ways the body can feel that it's breaking.

My energy comes in fits and starts. I know that each morning I have two deep troughs in which I have no energy at all. I have learned to trust that they will end, however deep I drop. When tested, I can pull something out, but only for a limited time. Certain things are easier than others. Things where I can be alone in my head - even if not in person - are always easier than things which require social interaction. I think this is because my head is where the fighting takes place, and if it's distracted by conversation it's working double time.

Physical pain is physically tiring. People recognise that. It's also emotionally and mentally tiring. Lots of people recognise that too. Emotional fatigue is painful, and physical pain makes it worse - and vice versa. A fair few recognise that.

Pain is OK because it is temporary - unless it isn't temporary.

Pain is OK because it's manageable - unless it isn't manageable.

Pain is OK because it's understandable - unless it isn't understandable.

The vast majority of people will never understand my pain. You probably won't, and I hope you don't. But that makes it even harder still.

I want you to know that pain is in all of me and I feel it all the time. The only way I know of dealing with it at the moment is to ignore it for as long as I possibly can. Sometimes I can do this cheerfully. Sometimes I can't. Occasionally it breaks down completely.

I already feel like a failure when I can't be cheerful, or even vaguely friendly. This feeling makes the pain worse: physical pain is far easier to handle than guilt.

This makes me feel a little less guilty, even though I can't promise to be more cheerful straight away.

I'll try though.

I promise that I'll always try.

Friday, 22 September 2017

Generic update

Well, it's high time I wrote something. To be honest, I've been struggling lately: since getting home from our holiday in France, I've had a lot of stuff happening and have swung between being incredibly busy and using all my energy on that and having no energy left the rest of the time. So, here's a quick lowdown:

Summer holiday

Whilst I was on holiday in France I did a lot of conditioning each day which was exhausting but has definitely helped my fitness. I've built up my core strength and, after a torn hamstring in my right leg, I also managed to keep on top of flexibility. It was all very painful!
My bad leg splits are now my good leg splits...
I also had plenty of time to play in the pool and went riding twice at a lovely riding school. It wasn't very far away except for how much higher up it was than our flat! The first time I went I had a lesson in which I attempted to ride the French way (hands higher - very hard for me) and the second time I had a lovely hack where we trekked to the top of a mountain and had a view all the way down to the sea.

Back home

In my first week back I started back at school, then had a showing competition (the final that we qualified for at Hartpury) and then the English Vaulting Championships.
We cantered! (Photo: Equinational)
There's a lot that I could say about all of it but in the interests of keeping records up to date I'll just do the basics now: school was fine, we came second in the showing and had a great time, and I won the vaulting competition partly by virtue of being the only para entry in the Pre-Novice category... but in fairness there were entries in the category one down (Walk Individual) so I'm still claiming it as kind of a win!

Since then

Various health problems: dislocation of my good ankle at riding last week which annoyed me (even though it went back in OK) because I need a foot to rely on! I also woke up with my shoulder out a few days ago and although it went back OK it's been really sore and weak since then. It has been a bit amusing going into school with my sling on - comments from the kids range from, 'You're, like, Injury Central 101' to, 'Oh really, NOW what have you done?'! I've had quite a lot of headaches too which is irritating, but on the plus side I've had some useful input from the physio about neck and head pain (lots of work to do though!) and from the sports physio about my hamstrings. Basically: lots of work for me to get on with to make sure I can keep moving as much as possible.
still my favourite skill because you don't need to land!

What's next...

Wheelchair racing
I'm not able to do much training at the moment because of my shoulder, back, neck, etc... so I'm doing some coaching! I'm hopefully going to be going on a coaching course soon so that I can really learn how to help a bit better. It feels good to be able to pass on some of what I've learned and what I've discovered.
At RDA we have an exciting new project: we're all going to be working on group musical rides which will then be filmed and entered into the regional round of the RDA UK competition. I'm going to keep our theme secret for now but it's very exciting! As well as this I've had another side saddle lesson and now had my first experience cantering on the left rein. It's harder on the left than on the right because keeping your balance is harder - especially with bar reins - but on the basis of 'let's just see what happens' we gave it a go and it was fun!

At the beginning of October we have the British Vaulting Championships, which will be in Scotland this year. It has to be said that organising the logistics has been more difficult than sorting my routine and outfit - and those bits aren't exactly easy! Training has been difficult for me but I'm hoping that I can make it through to the British and do my best there, then have a bit of a break whilst the club as a whole has a break.
Hoping to get this year's British Champion rosette too!
Despite the shoulder (and everything else) I've had fun going to gymnastics and working on all that I learned before the summer, as well as learning some new skills. The coaches are so friendly and encouraging and we have a laugh. It's hard, but I'm getting stronger and vaguely more co-ordinated!
SO much handstand practice and I'm still pretty naff at them! It's interesting to see how wonky my hips are - they're like this on every attempt. I need to rig up my phone to see if my shoulders are level!
There's a possibility that I can go along to a competition soon but that's not certain yet. Well, I *can* if I want to but I need to gain a bit more confidence about it being a good idea!
This is also going well. I'm very busy this year already and I'm also going on a course which takes place over a few months which will hopefully help me to help the children. Here are two little pictures to demonstrate how it sometimes feels!
That's about as much as I can type for now and it's been knackering. Cheerio for now!

Tuesday, 1 August 2017

RDA Nationals - Dressage

This year I sort of had two opportunities for dressage at the National Championships, because even though you are only allowed to compete in one Championship class (I had opted for the walk/trot test ridden side saddle on Rolo rather than the canter test that Boysie and I had also qualified in, on the basis that Rolo and I are going well at the moment and Boysie is VERY popular for everything and everyone else in the group) you can also do Dressage Anywhere. This was the first year that I'd had a go at Dressage Anywhere and it's something I'm going to be trying to get more riders doing in the East Region - and further afield, although I have even less jurisdiction outside the east of England!
Qualifying with Rolo at the regional competition
I've written about Dressage Anywhere here and here. If you're not aware of it, it's basically an opportunity to film yourself doing a dressage test at home, then to have that film judged and compared to other people in your class. If you're lucky, you get a rosette and even some prize money! Dressage Anywhere runs an RDA Online Championship each year. You qualify for this in the preceding rounds, which run from August to March, with the Championship taking place in April/May.
Results are here.
This year I had entered the Walk/Trot test on Rolo and for the Championship we went side saddle. This was only my second time riding side saddle so it was a bit of a gamble but it paid off when we won! The prizes for this were awarded on the Friday of Hartpury, and consisted of a lovely RDA rosette and, even snazzier, a Dressage Anywhere medal! Having a red rosette and a gold medal was a great way to start the weekend and it was a good omen as I dashed off to my first event (jumping) after the presentation ceremony. Clearly Ruth (who runs DA) is a good omen!
With our medal and rosette after the jumping - and Gillian (L) and Helen (R)

Anyway, my 'real' dressage test (performed live!) ended up being closer to the bottom of my list of priorities this year. This was a bit of a shame but I did put a lot of effort into the other disciplines and, having decided to ride side saddle, I also knew that there wasn't much I could do to practise as there was only the opportunity for one half-hour lesson, and it's so different to riding astride that normal riding wasn't really much help.
One of our RDA sessions before the Champs
Other than scrutinising my test sheets from the qualifier, 2016 Championships and my Dressage Anywhere side saddle test, the main practice I could do would be getting used to the saddle. In my lessons, I'd felt fine whilst on board (limited sensation helping me out!) but then dismounting and attempting to function afterwards was nigh-on impossible as my legs had just seized up so much that I couldn't move them or weight bear. I knew that I'd have to aim to be as comfortable as possible during the showing so that I was ready to go again the next day in the dressage. I also knew that I needed to recover from the dressage very quickly in order to be ready for vaulting!
To this end, I tried to get used to the saddle as much as possible by setting it up on a makeshift saddle rack at home and then sitting in the position whilst watching television. Sounds silly and I didn't think it would help much but although I was very tired after the showing (which was about 4 times as long as any other time I've ever spent riding side saddle), I wasn't as bad as I expected. After the dressage, I was in a lot of pain but nowhere near as stiff and unsteady as I'd feared.
Looked a bit silly too!
So anyway, the test! I knew the test fairly well, but practising on a sofa really isn't the same... For a start, sofas don't leap around with excitement at being out and about on such a glorious summer morning. I really did wish I was astride when I first got on Rolo - he was full of the joys of spring and then some. This is classic for him and frankly I'd been astonished when he'd behaved so well the day before. We were quite early down to the tack check so weren't allowed into the collecting ring straight away. Rolo was absolutely not in a mood to stand still or even just to walk. He was jogging on the spot and from side to side and every time I released the rein a bit he'd just start mega fast trotting...

It took a superhuman effort for me to relax enough all over and trust that he'd calm down if I led the way. I consciously tried to loosen as many muscles as are under control and to keep the contact really light. I looked up more and just kept him moving until he was ready to do some transitions and start settling down. To be honest, the fact that we were fairly calm by the time we went in is one of my biggest achievements of the weekend: it'd been quite a while since I'd felt that unsettled on a horse and, combined with my annoyance at myself for feeling wobbly, it was a mental challenge to get a grip and get on with it.
The other thing that sofas don't tend to do is poo. I was all too aware that Rolo had gone the entirety of our 'warm up' (which was mostly cooling down!) without having had a poo. The fact that he chose to do it as we came down the centre line for the first time and before we even hit X was really rather infuriating. I nudged him enough to keep him going in walk (in fact, I didn't know my left heel moved that much!) but unfortunately this meant that once he'd finished pooing he broke into an exuberant little trot, so we lost a mark there.
This photo features the offending poo on the right!
The rest of the test passed without major incident but to be honest I didn't ride it as well as I could have. I think a lot of it is my inexperience riding side saddle, because my steering and seat/position definitely had space to improve. On the other hand, the one thing that we'd hoped would be better side saddle - the halts - were some of the best he's done with me. This isn't exactly saying much, but it was gratifying nonetheless that the halt did actually include 'immobility'!
Anyway, the dressage test was over and I had managed to ride it side saddle in front of an audience without falling off! We didn't get a great score (62%) which was a bit disappointing but in a large class we still came in 7th (just out of the rosettes - even more annoying!). It was a bit of a drop after winning the class last year but managing it side saddle was a proud achievement and managing my anxiety before going in was even more of one: it's nice that I don't really get too nervous about competing, but it does mean that when things go a bit pear-shaped and I have a confidence wobble it's that much harder to manage. Whatever the result on Saturday, Rolo had done me proud on the Friday and I'd had very limited practice time so I couldn't be too upset about the dressage result. There's just plenty to keep working on!
Dressage Anywhere goodies!

Tuesday, 25 July 2017

RDA Nationals - Showjumping

This year I had entered the Level 3 jumping competition with Rolo and I was looking forward just to having a bit of fun - Rolo is great fun to ride and even more fun to jump! We had plenty of time to warm up in the collecting ring, although it was a bit irritating that both jumps that were up had to be tackled from the right rein. Rolo was feeling unusually calm so we just had plenty of time to feel loose and free but also sharp and on the ball. Those things sound mutually exclusive but aren't - it's vital to be a bundle of potential energy not just nervous energy!
Walking into the indoor school with Rolo brought back memories of doing the same thing two years before, when a lovely but overzealous official leapt up from a chair on the inside of the (very dark) barn just as we came in from the (very bright) outside world. Rolo nearly had a fit and it wasn't a calm way to enter our dressage test! This year, fortunately, there was no such surprise and Rolo seemed to have forgotten all about it. There was no jump in the indoor collecting ring so instead we just did a few transitions between trot and halt and generally worked on keeping him loose and elastic. Then it was our turn to go!
Riding into the big international arena at Hartpury is quite an experience (the picture above - not of me - goes some way to illustrating it). The building is vast and echoey, like an aircraft hangar. The judge seems to be a very long way away but the spectators seem awfully close. Even the steadiest horses can feel a bit unnerved by the unusual atmosphere but Rolo seemed to be on best behaviour! We walked down to the end, chatted briefly to the steward then saluted the judge and began our trot around. I took a good look at the line to the third jump as we went around, then the bell rang and we picked up canter before heading for the first jump.
Well, Rolo jumped very nicely. He rapped the second jump but it didn't fall (phew!) and he popped over the spread neatly.
At the change of rein we had been instructed to return to trot rather than attempt a flying change, which was just as well as we can't actually do a reliable flying change yet! We then had to pick up canter again for the final line and even though Rolo worried me a bit by leaving the upward transition really rather late we did manage it and popped over the final jumps quite happily.
We cantered through the finish then slowed to a trot before turning down the centre line, halting, and saluting the judge. Job done!
I felt that we'd done fairly well - no jumps down or refusals, a few moments that could have been neater for the style mark, but generally not a bad job. Gratifyingly, the judges thought so too and awarded us 87%, which was enough to win the Senior section and the class overall! It was a lovely way to start the weekend and I'm very proud of Rolo. What a super little horse!

Saturday, 22 July 2017

RDA Nationals - Showing

It's not a secret that I really didn't feel very prepared for the showing class at the RDA National Championships. Along with Eleanor and Olivia from my RDA group, I'd been put forward to it on the basis that we'd be there anyway so we may as well give it a go. I didn't really think it was my thing but I never say no to having a ride so we went for it!

We had a practice session at RDA where the three of us and Chris went in the outdoor arena and Gillian did her best to explain what was likely to happen and what we would be required to do. Suffice to say we had a lot to learn about showing etiquette!
I was able to borrow a side saddle from the super-duper Philippa Kemp-Welch, who is my side saddle instructor. I tried to research what should be worn with said saddle but found this to be something of a rabbit hole...there are just so many variables and I was very confused about what would be correct for riding Rolo as an RDA rider.
Presumably not this attire though.
Fortunately it was around this point that I was contacted by Katy Downing, who was Stable Manager for the Championships and also happens to be a very experienced side saddle rider. Salvation! She gave me so much advice and reassurance and also lent me her fabulous tweed habit - and a waistcoat to match, a shirt, tie, helmet, gloves, jods and meant that I ended up going into the ring with a horse who wasn't mine, on a saddle I'd borrowed, with clothes that weren't mine - all I had that was my own was the show cane my brother gave me for my birthday and my underwear!

It was a tiny bit stressful getting down there because I hadn't really banked on them running early, and had gone to watch Chris do his showjumping. However, we still had some warming up time before the event started properly. The showing class was a qualifier for the SEIB Search for a Star final in September so it was pretty popular, meaning it had been split into three sections. I was in the second section with Olivia. There was one pretty naughty horse in the class that Olivia and I both had to circle away from - he was winding Rolo up and I was having enough trouble keeping a nice trot as it was!
You can tell by the face I'm pulling!
We spent a while walking and trotting on both reins. The trot went on for ages and I think it was probably the longest single period of time I've ever spent in trot on a side saddle. BOY was it uncomfortable! Every time we looped past the grooms I tried to remember to smile properly instead of the grimace that was creeping onto my face. I began to feel a bit sick and my back was spasming badly. I was seriously thinking that I might need to start walking - I wasn't sure if that was allowed and I really didn't want to throw in the towel but I didn't feel great at all. Fortunately, they called us to walk and then line up and I managed to be nearly at the very end of the line, so I had plenty of time to rest and recover.
The giddy grin of relief!
At this point the grooms were allowed to come in and tidy us up. Katy and Gillian arrived armed with baby wipes to spot-clean Rolo and instruct me to smile more and hold my bloomin' right shoulder further back (in my defence it's hard with right-hand bar reins!). Katy also accused me of trump-face (i.e. it looked like I was trying not to fart), which I misunderstood as Trump-face. My outrage left her somewhat nonplussed until I realised the next day that she hadn't intended to be quite so mean!
With Gillian (navy top) and Katy (red top)
Rolo was a really good boy in the line and stood reasonably patiently, even though there were lots of horses to go before him and he had to wait longer than he would normally tolerate. When it was our turn, we walked around to meet the judges and had a lovely chat. I confessed that it was only my fourth time riding side saddle and, far from being horrified as I'd feared, they were very kind and said I was doing a good job! Their first question was how old Rolo was, which I answered easily, then later they asked me how old I was and I couldn't remember!
Chatting to the judges
After our little chat we showed some more walk and trot on both reins with a trot serpentine. At home in Cambridge we'd practised some canter but that was when I was riding astride. I hadn't cantered side saddle since my first lesson and didn't feel ready to give it a go in such a high-pressure environment. Fortunately canter wasn't compulsory!

After our little show we had another quick chat with the judges, before returning to the line up and waiting for the decisions. I was very pleased when we were called forward to go towards the final judging. There were three others chosen from my group - a beautiful roan pony, an amazingly cute little Welsh pony with a tiny but brilliant rider, and another coloured horse.
Chatting to the judges at the line-up after the first round. They were so friendly!
We then had a bit of time to go and have a rest whilst Eleanor's section did their bit. Kathryn looked after Rolo and Helen fetched lots of drinks for me whilst I sat on a mounting block as I was very, very hot and thirsty in all that tweed! It was good to get out of the saddle too - I do like riding side saddle but it's not the comfiest thing in the world. After about half an hour I hopped back on and over the next five minutes I learnt that sitting astride, stirrup-less, on a side saddle on a fidgety, grumpy horse isn't very secure! Soon enough, though, I had enough helpers to get me all sorted out again and we were back into the collecting ring.
Posing for a photo before heading back in.
From where we were we could just about see into the show ring but from our perspective it was difficult to see if Eleanor and Boysie had been called forwards or not. It looked like they were forwards and, hooray, they were! It felt nice to go back into the ring with a friend there too. We walked and trotted again but fortunately not for as long this time. We didn't have to do our individual show again but all stood in line waiting nervously for the judges to make their decision. I was absolutely amazed when Rolo and I were called in second! After the shock of that I was utterly delighted when Eleanor and Boysie came in 6th for the final 'placing' [in most equestrian events, rosettes or 'placings' are awarded down to 6th place]. Two Cambs College combinations in the top 6!
Boysie asking Rolo if he did good.
I was a bit scared that we might get bumped down the placings at this point because Rolo was getting a bit grumpy, having just about hit his limit of how long he felt was appropriate for standing still. Fortunately he had a sash around his neck and I had a rosette looped through my number before they could change their minds!
Another one with Eleanor :)

We were also given a round plaque thing which I'm sure would make more sense to me if I'd done this kind of thing before...
With Lottie Dronfield from RDA National.
After lots of photos had been taken it was time for a lap of honour in which I did have a canter, which was fine - so maybe I will canter next time!
A hug from Helen for me, a pat from my mum for Rolo, and generally just a rather happy scene!

Monday, 17 July 2017

Left shoulder

Many of you will be aware that I have various problems going on with my left shoulder. These are longstanding and date back several years, although a few falls in the last two or three years have caused particular problems. The joint is very unstable and also pretty damn painful! It's caused and/or exacerbated weaknesses in my hand. Watching this video has been really weird - a lot of it was filmed on my webcam so it's a mirror image, which means I get to see what my left hand would look like if it worked properly (the fast forward speed neatly disguises my shaky hands!).

After two years of riding one-handed and letting the left arm flop about, we decided about a year ago that I needed to keep it as motionless as possible whilst riding, because having the arm yanking around was causing more and more damage to my shoulder. That's why I am now more diligent about holding the upper arm into my body with my shoulder support (which looks like this and is easily the most effective orthosis I own for any joint, although I do have to pull the white tape under my other arm to hold it tight enough) and why I also have a sling which holds my lower arm to my body. There's still a bit of room for the arm to jiggle about and because my back is twisted it can't make me completely straight, but it helps an awful lot!
First slung-up jumping competition last Christmas with Rolo
Anyway, the problems have stabilised a bit through limiting the movement when I'm riding. However, being a wheelchair user means that there isn't a realistic chance of it getting any better on its own and since I've now managed to injure multiple different parts of the whole shoulder area the instability has got even worse. This means that it is constantly really painful - which is fine, because it can be ignored - and also unable to take my weight. This is less fine because I need strong shoulders for vaulting, gymnastics and wheelchair racing, and for pushing my day chair along any surface that slopes down slightly to the left!
Another one cos he's so pretty!
I have seen a long string of medical professionals about this naughty shoulder over the past few years but it finally feels as if we may be getting somewhere. Most of the time people have been very unsure of what would be the best therapy for me. I've had endless physio and also some hydrotherapy. I've had occupational therapy to try and restore some function to the left arm and hand. I've had numerous surgical interventions rejected on the basis that the genetic defects in my tissue inhibit healing and any surgical changes would be less likely to last long. I thought we were getting somewhere when, at the beginning of this year, I was sent to somebody who would give me some steroid injections in the shoulder to try and ease the pain, but then this was contraindicated because of the steroids I take for my ticker!
Not what I'm aiming for...
Anyway, the most recent occasion of note has been my appointment last month with an orthopaedic surgeon. Nothing was decided, but I have an MRI booked and he has promised to try and think of something that can help. We had a nice chat about how the shoulder had come to be in its current state in which he informed me that, when he was little, he used to ride a pony called Bumble. How cute is that?!
Just as a quick heads-up to designers out there, nobody seems to have made a pony version of this yet...
The MRI was initially scheduled for a Thursday afternoon, but it just so happened that this was also the last RDA session of the year and therefore also the last session before going to Hartpury for Nationals (more on this another time!). Despite my mum's annoyance I refused to miss RDA so the scan is now later this week. I'm not a huge fan of MRIs as I'm pretty claustrophobic, but I've come a long way since my first scan as a kid when I cried all the way through it and my mum had to stick her arm in the end to tap my head so I knew she was there! Towards the end of next week I'll be seeing the surgeon again and I just really hope that he has something useful to suggest. Obviously I don't want him to do anything that would interrupt training/competing over the next few months (I have some big plans ahead) but with the speed of the NHS this probably won't be an issue!