Friday, 21 April 2017

Preliminary list of expected and unexpected occurrences relating to my new hearing aids

Last week, I finally bit the bullet and was fitted with my first set of hearing aids. Some things I was prepared for; other I wasn't. Here are a few of the things that have stuck out over the last week!
  1. Within minutes of leaving my appointment, I had the itchiest ears I've ever had in my life. I basically wanted to scrape the inside of my ear with a tiny rake. It's weird, because I've never had this problem with earphones but BOY did my ears itch. I've got over it now but it was unbearable for a couple of hours!
  2. When wearing hearing aids do not try to shove earphones in as well...
  3. My hearing aids actually stay on quite well. I've been vaulting, erging and to gymnastics, and the only uncomfortable things were a shoulder stand at vaulting and falling into the foam pit (see below) at gymnastics. This bodes well for when I actually make it out in Buster!
  4. When you have the world amplified, it sounds really loud - like, really loud - but once you've got used to that it gets quiet and mumbly again. I need to go back to have the tech adjusted so it's a bit more dramatic an effect, but I have to leave that two weeks at least.
  5. Brushing your hair can easily rip the aids out of your ears. If you brush vigorously, they'll also be flung across the room by your brush.
  6. Pulling off a hoody or jumper is similarly hazardous.
    I searched for 'stuck in my jumper' and Google did not disappoint.
  7. Put hearing aids on, put glasses on, realise two can't co-exist. Take glasses and hearing aids off. Put glasses on first this time. Put hearing aids on. Put them on again because they will inevitably have fallen off on the first attempt because your glasses are in the way. Take glasses off. Try putting them back on again quickly to see if the arms can just find the right place by themselves. Take them off. Try putting them on slowly to see if that's any better. Take them off. Take one hearing aid off. Put glasses on. Make one side comfy, see how it feels, try and match the other side. AND SO ON FOR ETERNITY.
  8. When your batteries are conking out they will play you a pretty tune for hours (they can't be that run down if they can power a pretty tune every minute for an entire day!). This tune will haunt you in your sleep.
  9. It's good to know that these tunes happen otherwise you will become that crazy person constantly asking, 'Where is that noise coming from?', which, given that you will be known for not having the best hearing, doesn't reflect well.
  10. If you attempt a shoulder stand on a horse whilst wearing hearing aids, expect one ear to be squished so much that the in-ear part pokes you enough to lose your sense of balance. How you hold your shoulder stand after that is anyone's guess.
  11. Changing batteries needn't be a chore. With the magnetic ended brush/pokey stick, you can pretend to play the 'fishing' game where your rod is said pokey stick and your fish are hearing aid batteries. What could be better?!
  12. It's really, really hard to find a tiny hearing aid at the bottom of a foam pit.
 I'm sure there'll be plenty more insightful comments to follow!

Monday, 17 April 2017

This is how it feels when nothing feels right

The rushing, whining, shrill, clear ring sweeps round your head, dives through your ears, meets in the middle with a sonic boom that resounds in your skull, that shatters bone, that forces out energy and draws it back in; it cycles; swirling, whirling around; your constant companion, a familiar gaoler.

The weight in your bones that (now heavy, now sharp) is a constant reminder of invisible scars can still shock and surprise you and trick and beguile you, or ruin, betray, and wind you up tight so the merest light touch causes searing sensation of burning and writhing and crumbling and dying.

The feeling you get, deep down in your guts, that you've cheated your body so now you must pay the cost that's inevitable, incontrovertible; and you hear Charon cackling; the water is bubbling; the boat sways and rocks as down to your soul you regret what you did though it can't be defined; that unnamable, ignorant, unidentified lapse of your judgement which now has your whole body racked; you curse it and bite down to hold back the tears as your torso writhes, wriggles and bursts from itself.

Then: the soft fluctuation of the scene right before you; the perimeter darkens; the world falls in. Is it your eyelids closing, or just that, to you, the cosmos darkens; the floor meets the sky; your feet fly away and your head drifts aside and although it is falling you know that the landing will billow beneath you for infinite moments in blissful abandon 'til, conscious, the hard ground shocks up through your being; your body; attention; your very own soul; for reality hits and it tastes of fresh blood and smells of gut acid and feels like anger and looks like confusion?

'Cause it wasn't eyes closing but heart that was beating too fast to be safe, and sinew that failed to hold up your frame. It wasn't just sleep; it was brain numbed by medicines and too strained to function; it was tiredness extreme and unhealthy, pathological; exhaustion without a clear cause or a remedy. It was pain, stress, and sickness; it was rage and frustration; it's the utter fatigue of your body's attempt at penance eternal for crimes uncommitted; the mind's way to punish the shell that deceived it, that mimicked a body with organs blighted by DNA pitiless, heartless and, yet, responsible for who I am - is this all that I am?

Feigning a life where these things go unnoticed; where hopefulness, cheerfulness, hard work and prayer will somehow correct all the struggles you have, as if smiling and foolishly, blindly believing that things will get better and pain will be healed and consciousness always preserved and unthreatened, will somehow change things when everyone knows that you're just in a dream world and the sooner you wake the sooner you'll see that the only thing doctors can tell you for sure is your illness gets worse with each day that goes by; there'll be far more pain and there'll be far more sickness; until the last day when you die and then who knows what will happen, or if death DOES kill pain?

This is what happens when nothing feels right; when all is a struggle and hope has long fled and you're tired and fed up and want all pain to stop. Hope's not always easy; it's not always yours and you've enough going on without feeling so guilty that sometimes you're down.

Tuesday, 11 April 2017

Left shoulder update

Lately I've been pushing my luck a bit with my left shoulder. After a string of injuries I could barely lift my arm at the end of last year, but an onslaught of determined and possibly foolish attempts to make it function better means that I'm now doing quite a bit better. Once I'm warmed up, I'm fairly good at lifting my arm above my head. Before, I couldn't get my hand to shoulder height, so this is a good development. I'm not fully in control throughout the range of motion but at least there is now a range to speak of!
I love this! Credit

At some point in January I started trying to do handstands. This didn't go so well - at that point, I couldn't lift my arm enough to start safely from standing, so I'd go into push-up position and get someone to walk my feet up for me. Every single time - without fail - I would get so far then my left shoulder would suddenly buckle. It was so frustrating because it wasn't especially painful - it was as if moving the joint beyond a certain point or putting it under a certain amount of pressure just flicked the 'off' switch and it would collapse.
I found this and it made me smile!
My sessions at the disability gymnastics club have been really helpful for this. They got me doing handstand rolls onto a big soft wedge, which meant that instead of just falling down on my chest I could feel confident about rolling forwards and not getting hurt. We also discovered that bouncing on the trampoline (sitting or standing) is good because it makes me swing my arms. The right arm is much more mobile but the improvement in the left arm after just a few minutes of bouncing and swinging is really noticeable. Those are both quite fun ways to build strength and mobility, but I've also done the boring stuff too - mostly weights and physio exercises.
Sitting and bouncing and waving arms!
Lots of gymnastics seems to rely on the ability to keep your arms above your head, so there's a lot that I'm not very good at yet! I thought I might have an advantage with other forms of upper body strength (being a wheelchair racer and all that) but so far my attempts on the uneven bars (well, just the lower one) have been blighted by a combination of my dysautonomic blacking out and a general severe lack of co-ordination! Bars work really is fantastically difficult and I have huge admiration for anyone who can do the simplest skill, because I have so far failed at everything! I've only found one thing that suited my upper body strength and, although it's not very impressive, it nearly killed me:

Anyway, to cut a long and dull story short, I finally feel as if I'm making progress! The joint is a lot less stiff than before. It also hurts a lot more, but that's because I'm using it again. Last week I did some more shoulder stands at vaulting - a move I haven't tried for a few months because of the stress it puts on my shoulder. That night I noticed some dodgy looking bruising even though the pad is soft, so now I'm learning to do a shoulder stand balancing on my other shoulder. You might think this is an obvious solution but it feels SO wrong doing it the other way round - a bit like writing with your other hand, or folding your arms the wrong way round! On the plus side it doesn't make my left shoulder worse... I haven't yet attempted a roll off (which is the move which caused the most recent injury back in September) but maybe I'll have to learn to do that the other way round too. Hopefully I won't just hurt my right shoulder instead!
Shoulder standing the other day on the bad one.
I've also started attempting more hand stands. I still fall A LOT and I spend lots of time sitting on the ground waiting for my head to catch up with me but in general I think they're improving. Stability in my left shoulder and maintaining consciousness are luxuries right now but it's so exciting to feel that I am slowly, but surely, getting somewhere. I'm getting videos too so that I can see what I'm doing, since I sure as hell can't feel it! Obviously this is very useful but mostly at the moment I'm enjoying watching my falls in reverse motion: entertaining and educational. 😉
Tried to upload a video but it wouldn't work. There's a lot of this, though - more of this than anything else!
So, update on the shoulder: it hurts more than a few months ago but does more. I'm potentially getting a steroid injection, but this will depend on whether they're allowed to administer it when I'm still taking steroids for POTS. My body clearly doesn't want me to do handstands - without the fludrocortisone there's no way I could be upside-down at all, and without a fix for my shoulder my time before another major injury is limited! However, I want to be able to do a handstand. I am going to keep working on it. In the meantime, just the ability to shampoo my hair is a help!
You shall have clean hair!

Friday, 7 April 2017

Dressage Anywhere competition

Recently, I took part in my first ever 'Dressage Anywhere' competition. They run a number of different classes each month and all you need to do is video yourself at home and upload your video to the website with your entry form, the idea being that you can enter from pretty much anywhere in the world without having to leave home.
Each month from September-March there is an RDA competition, with each of these acting as qualifiers for the RDA Dressage Anywhere Championship, which takes place in April/May each year. The last chance to qualify is March of that year, and you have to have uploaded your video by 31st March - so when I found out about it with only ten or say days left in March I had to get my skates on!
I googled "wheelchair skates" and found these - 'chariot stakes'!
My first attempt to video the test wasn't ideal. The weather was just horrible - wet, windy and cold. I was on Oscar and he wasn't particularly impressed at the idea of doing dressage outside in those conditions (I suspect that if we'd been jumping it would have been a different story!) especially as the test was a bit below his normal standards and I think he felt it was beneath him!

Of course, complacency is never helpful and him refusing to walk nicely meant that the general impression wasn't quite as fluent as I'd hoped. It didn't help that all the things he'd seen a million times before were suddenly terrifying, as was the sight of my mother in an anorak with her hood up. We had many, many spooks!
I love this!

I had another opportunity to do the test a couple of days later on Rolo at RDA. Rolo has a really good walk - you don't have to do anything with it, really! He's very happy to motor along with little encouragement. The only thing he's not so good at is stopping! Most of the test I was doing was in walk, which felt odd to me because I always felt as if I should be moving faster.
This expression looks like boredom but is more like concentration!
People often think that a walk test is easier than a trot or canter test, but I find them harder. Most dressage moves are easiest in trot - it gives you an excellent rhythm and near-symmetry in the horse, so straight lines and turns alike are easier to control. Trot also has the advantage that it's easy to influence without straying outside the pace. In walk, for example, a horse like Rolo will easily break into trot if you nag him too much and don't control your seat properly. In trot, you can use your rising to command the horse to stay in trot (lucky that para riders can use rising trot at all levels) throughout your extension, collection and lateral work. I find it far easier to keep the correct bend or straightness in trot than walk because walk gives me too much time - I twitch and fidget (unintentionally) and stray off course but trot keeps me on the straight (or curved, where applicable!) and narrow. Concentrating on walk throughout a whole test is phenomenally difficult, as Sophie Christiansen once pointed out!
Although with 45 Gold medals at international level, and a world number 1 ranking across all para grades, she's clearly rather good at it!
Anyway, this test involved just small amounts of trot but mostly walk. I had learned it with my new 'learn a test' whiteboard affair so bravely (for me!) did it without a caller. This was fine until I got home, uploaded it (with only one day to go to the deadline), then made the mistake of watching another person's video. It was fine until they turned across the school at a point I wasn't expecting - argh!!!! Then I realised I was watching a different test for a different class...doh.
I scared myself...
Anyway, the whole process was pretty painless. All I needed to do was register (for free) with Dressage Anywhere, fill in the entry form and pay (£12 for this class), then upload my video. Uploading took over two hours and I was worried it hadn't worked, but it did eventually. There's also the option to upload your video to YouTube (which I did, as a backup) and provide a link. I think I might do that next time, because it would have been far quicker!
Rolo's halt. Not exactly straight but fairly neat - even if it did take two attempts!
The tests were marked by 2nd April and I was pleased to come first! The score sheet also had some really useful advice, and I'm hoping that I'll be invited to compete in the annual Championship so that I can put that advice into practice. The rosette came through yesterday so I was able to take it to RDA and get a photo with Rolo. 😊
I also won some prize money which covered the entry fee and then some, so my mum and I bought sweets and chocolate for everyone at RDA - all the riders had to wait for me to finish before they could get started and although I didn't ride again later I felt a bit bad about monopolising the arena at the start!
Here's the video I sent in:

Tuesday, 4 April 2017

Sun's out guns out!

I've not posted much about wheelchair racing lately, mostly because nothing very exciting has happened. I haven't had any races, I haven't had had any noteworthy training sessions, and it's all been rather 'same old, same old'. However, there's a lovely shift that happens after the clocks change. The evening sessions become so much lighter, so instead of starting in darkness we finish, just about, in daylight! It makes me feel more energetic and gives me such a boost. One of the best feelings in the world is getting out in the chair and pushing as hard as possible in short sleeves - it just feels so liberating.
This month I really need to start training a bit more intensively. I have a 10k at the end of the month and a series of track races from May to July, and I've taken my foot off the pedal a bit to make space for riding. By this time last year, I'd already done two half-marathons so there's a bit of catching up to do to get fit. Just getting out has felt difficult since I moved further away from Cambridge in October - there aren't as many flat places round here, and no track or decent stretch of traffic-free road surface! Today, then, I celebrated the Easter holidays by going for a wheeling session along the Cambridge Busway.
I found a cute windmill!
I decided to be cautious and only pushed for just under 9k. My back and legs have not been happy in the chair and I wanted to test them to see how it felt - I'm in the chair for much longer during our squad sessions on the track, but we don't push continually so there's plenty of time to lean on my arms and rest my back. In my last half-marathon, Peterborough, I was in agony pretty much all the way through and the same thing happened today, so I'm going to shift my foot plate and hope for the best! I'll let you know how that change goes...
The sad irony that wheeling hurts my legs (and back) more than my arms or lungs!
I thought that I'd escape the rain but it was a bit drizzly. I had no klister so just had to get on with it, which was fine, but I was very relieved to get home and get warm and dry! Rosie was pleased that I had the fan heater on too... 😉
"Lizzie, quit hogging the heater."