Tuesday, 24 January 2017

Regaining fitness

The last few months have not been great for my fitness. Various illnesses and injuries have compounded to mean that I wasn't able to train as intensively, and boy oh boy did I feel it at our first wheelchair racing session after New Year. The problems had been there since before Christmas: throughout December, my times weren't great because of my dodgy lung and serious left arm issues (i.e. I couldn't move it). My last track session of 2016 saw me doing several 400m pieces, the fastest of which was still 10 seconds slower than my PB from May. I was in a new seating position which although odd-feeling should have made me faster, so was no excuse really. My three word summary in my training diary tells it all: "Need to train!"
Champions are made in the training, and all that jazz.
Because our squad sessions are on a Monday, we missed two sessions over Christmas (Boxing Day and New Year's bank holiday). Come the 9th of January, the fitness I'd barely had a month before had pretty much disappeared. I was the only person there so I had minimal rest but the six 400m intervals I did just felt dead. It wasn't even that my arms were sore, or that I was out of breath - I just had no energy to move. I felt pretty despondent about it, so a few days later I headed to the gym for a brutal erg to jolt my irritating body into action!
I'm sure I've shared this before but it's a classic!
Since then, I've been trying to up my training a bit. Because I've just started a new job, I've had to be really sensible. Even though I'm only working short hours, it still takes its toll and there's no point being so knackered by work and training that I end up being useless in either or both. At the moment, though, I feel I'm striking a good balance. I push myself hard, my heart rate soars, my breathing hurts, and yes I do still tend to throw up (nice one EDS!). The moments of really pushing yourself are deeply unpleasant, but the reward is greater than the price. It feels good to push myself and to see results.
"But I'm getting better, Mr Wonka, sir, I promise!"
As well as erging and getting in some time with Buster (including one particular 10k session where I was basically crying whilst pushing because my hips and back were in so much pain) I've been working on weights, and continuing with the gymnastics sessions. Vaulting has been ramping up as I'm putting together a new routine (still!) with lots of new skills. I'm pretty much learning at least one new thing every time I go, which is very exciting but tough!
Star! Although that's changed a bit already in the last week...
Anyway, after doing a bit more work at the gym I found that the next week, the session was a bit easier. I'd been relying on muscle relaxants to allow me to get some sleep but I stopped taking them after the weekend, so I felt a bit less spaced out. Becky and I did sets of just over a minute - I started at the 300m mark and she started a bit in front, and the coaches moved her backwards or forwards based on whether I was catching her or not. It was hard work but really nice to train with somebody, and to have a little bit more time to rest each time!
Teamwork makes the dream work! (Unsurprisingly this photo is not from January...but it is a nice one of me and Becky)
Last week was more of the same: gymnastics, vaulting, riding (RDA started up again), erging, weights, stretching, wheeling... Hard work, plenty of it, and plenty of rest.
Plenty of rest, plenty of rest, plenty of rest...
Last night, it was just me again. We did a different sort of session: 600m, 1000m, 1000m, 600m. I prefer longer distances anyway and I was really pleased that my final 600m was only one second slower than the first one. I was tired, and needed the 200m rest between each one, but for the first time in ages it felt like it was actually my arm muscles and my lungs that were the limiting factor, rather than the new seating position playing havoc with my back and legs, or general tiredness, or just feeling fuggy. Arm strength and physical fitness can always be improved, so if they're the things holding me back then it feels positive.
Here's a still from a video of me feeling positive whilst doing sitting-down trampoline bouncing!
Fitness can be lost soooo easily. It seems to me a massive evolutionary disadvantage for humans to be able to lose fitness really quickly and for it to take so long to return, but there we go. It will come back, and I will get better. I was beginning to feel I was on a plateau, then I began to feel that I was regressing. I still feel that a bit in some ways, but now I feel optimistic that, actually, I can improve. I just have to keep working hard, grit my teeth, and not give up!

Friday, 20 January 2017

New job

Just before Christmas, I successfully interviewed for a new job at a local primary school, and my first day was earlier this week. So far, I absolutely love it, but part of the reason why I love the job so much has made me realise that in my last job I was not adequately supported and I was legally (and morally!) entitled to a much better deal. I'll discuss it below, but first, a few things about the new job and why I like it.
Given that this is a post about my new job at a primary school, all the pictures will be only tenuously relevant!
My new role is as a Learning Mentor (LM), which I had assumed would be like a Teaching Assistant (TA), but apparently is quite different. The biggest difference for me is that I can be far more autonomous in my new job. In the last job, I basically sat in teacher's lessons and supported the students in keeping up with the lesson plan. Now, I take children out of lessons and what we do in our sessions is basically up to me and my professional judgement.
It fails amazing to be trusted to engage my own intellect and to have the flexibility to plan different interventions for different students. I love the fact that I can create my own resources and work with children in the ways that I think will most benefit them - as a TA, your role really is to support the teacher and to ensure that the students do what the teacher wants; as a mentor, I want to help them get the most out of their normal lessons but if I think a student will benefit from a particular activity or a personalised approach then I can actually deliver that. It sounds simple, but I hope this will mean that I make far more of a difference, which means that not only will the children benefit but I will too! Job satisfaction is a marvellous thing.
The second thing that makes me feel positive about the school is just how friendly it is. Instead of 8-form secondary school entry plus sixth form, it's a 1-form primary entry, so obviously this makes a difference. All the staff are also very friendly, and so far I've got the impression that they actually enjoy their jobs and like working with children (which is never a given in education, strangely!). The students themselves are lovely too. Obviously there are some who have behavioural problems, which you expect in any school, but even they are engaging to be with and can be motivated and encouraged to try their best. They're polite and friendly towards each other as well, and any disagreements tend to be minor and easily resolved. Basically, it feels like a nice place to be.
The buildings and grounds of the school are lovely too. The classrooms are nice and light and a good size, and there's plenty of playground space plus 'the meadow', where the smaller children do 'Forest School' and are actively encouraged to climb trees! The biggest benefit for me is that the school is only a short push up the hill from my house - and when I'm coming home, I just have to push once to get out of the school gates and then I can freewheel all the way home!
From here.
One other thing that makes me feel comfortable around the school is that SLT have actually gone to some lengths to ensure that I'm able to move around, and that procedures such as fire alarms are manageable for me. I've had two full inductions to the school (one with the headteacher and one with my line manager) in which I've learned more about the students and staff I'll work with, the school's procedures and policies, how I can get around, what support there is for me, and so on. The level of attention to detail is so much better than I've experienced before and it feels nice that they care about me!
I matter too!
At my last school I did have to go to a safeguarding talk but it was nowhere near as thorough (or interesting, or relevant) as the equivalent at the new school. Following up on that I also had to complete two online courses on safeguarding and FGM and send the certificates into school - which I never did before, and feel I probably should have done. I'm sure that all the relevant 'legal requirements' (both for safeguarding children and in terms of my own safety around the school) were met in the old school, but I fail to see why there are so many more legal requirements at this school than the last one.
Or, in other words, I'm now doubting that all the necessary legal requirements were fulfilled at the last school, such as listening to the Occupational Health assessor, ensuring fire regulations were met, meeting my employment rights (breaks, harassment, general H&S, indirect discrimination, etc.). But never mind... The important thing is that the new school feels good for me and I think I can be happier and less frustrated in the job. I hope my enthusiasm lasts!

Tuesday, 17 January 2017

Half a life later...

When I was 13, I broke my back doing gymnastics (ouch). Now, at the age of 26, I'm back - yes, ladies and gentlemen, I have joined a gymnastics club!
Now, obviously, I'm not going to be doing the same stuff as I did when I was little. So far I've had two sessions and they've both been pretty restrained, but it's amazing for me to experiment in the gym and discover ways I can use the apparatus to strengthen my body and gain more control over my movements. I'm able to take advantage of subsidised classes tailored specifically for people with disabilities, and since I'm the only disabled gymnast at the moment I get a coach all to myself. It gets intense, but it's really good fun and I can feel it being helpful already.
And here is my new playground!
In the first session, I had a bit of time walking with my crutch on the sprung floor, which felt heavenly on my joints. I also learned that the floor had cost £18,000 (nearly 22,000 USD) so maybe I won't be getting one at home any time soon! We also had a go on the big trampoline, which is sunk into the floor so feels fairly safe. I did lots of bouncing in a sitting position before having a go at lying down bouncing. It sounds relaxing, but it isn't - it's really hard on your core and also whatever muscles you use to start bouncing from a supine position...
Kind of like this...
On the trampoline I also practise walking without a crutch - when I fall over it isn't a problem! - and we loop exercise bands through the holes so I can practise various arm movements with a bit of resistance. I wrap a lower resistance band round my left arm so that I can work on both arms without worsening my left shoulder.
One thing I don't get with Popeye - why are his forearms so big and his upper arms so small?!
Yesterday, in my second session, I also tried the beam for the first time - but a very low down version, only about one inch off the ground! Walking along it with my crutch was OK but without my crutch I really struggled and kept falling off, so that's something to practise. I had thought it would be quite easy so it was a bit of a wake-up call to realise I couldn't do it. Still, with a bit (/lot) of practice I'm hoping that I'll be able to train my body to get better at balance and motor control.
I mean, how hard can it be?!....
It's really nice to work on things like this through sport rather than traditional physio. It makes it far more enjoyable and gives you a more concrete goal to work towards, as well as a reason for getting there beyond purely making my life easier. It's far more motivating to learn a new, named skill than just to do more reps of stretches or weights. Best of all, falling over in the gymnastics hall (i.e. onto a sprung floor or a trampoline) is far less painful than in a hospital! I feel very lucky that the sessions are really cheap and that the facilities exist at all - and, of course, that I've got very lucky with a brilliant coach who is brimming with ideas. This will be soooo valuable for my vaulting as well as general mobility. Happy days!

Thursday, 12 January 2017

RDA Vaulting video

Here's a video I made for an RDA talk to show what vaulting is all about. The talk was aimed at potential donors who weren't especially horsey, and who found the idea of vaulting pretty exciting! I made it before heading to the English and British Championships, so it goes up as far as September 2016. You can see it below or click here to find it on YouTube.

Tuesday, 10 January 2017

EDS feelings

Yesterday a new article came out on the BBC website (you can read it here). It's all about people for whom normal anaesthetic procedures don't work - either because it takes huge amounts of an anaesthetic to have any impact, or because unusual types of anaesthetic have to be used instead. It's an interesting topic and something that is recognised anecdotally by pretty much all EDS-ers, and more formally by various doctors - although not by anywhere near enough of them!
Like many others, I've often just believed that local anaesthetics just aren't very good. It's a reasonable assumption to make - if you ever some dental work done, for instance, and you're given medication which makes your face a bit wonky but doesn't stop you feeling, you'll just assume that the power of a local anaesthetic is limited. This goes for any kind of local/topical anaesthetic, such as having stitches or getting an IV line put in. Every surgical procedure I've had done under local anaesthetic I have felt, and assumed that that was normal. It's not too painful - the sharper the knife, the less you feel it anyway.
It's also well-recognised that analgesics (normal painkillers) are less effective in people with EDS. This is partly because the extent of our pain is so much greater, and obviously the more accustomed you are to pain the better you will handle it. However, it's also the case that are bodies just don't respond to standard painkillers as much as other people's. Something like ibuprofen/aspirin or paracetamol (the most common painkillers in the UK) will be unlikely to make any dent in EDS pain. Combining those drugs with another (e.g. co-codamol, or codeine and paracetamol) helps a bit but still needs to be prescribed at a far higher dose than is available as an over-the-counter option.
I've known non-EDSers be prescribed Naproxen (a stronger form of NSAID than can be accessed without prescription) who have found it to be very effective in small doses at relieving pain. Most will also report side effects such as feeling very tired, spaced out and woozy. I have also taken Naproxen years ago and found it did absolutely nothing even in very high doses, and I always feel a bit mixture of envy and even contempt (mean, I know!) for people who can take a tiny dose of a drug which is not particularly potent and instantly feel that they're on a morphine drip.
EDS tolerance can have its advantages though. I once overdosed on codeine quite badly by mistake - instead of taking four low dose tablets (already double the dose suggested; a dose which makes most ablies feel peculiar) but slipped up and took four high dose tablets. The resulting dose of codeine was ten times what it should have been. Whilst I probably should have panicked and rung a doctor, I sat tight and felt absolutely nothing. Literally, zilch. It didn't even take any of the pain away. I don't really bother with codeine now!
It's really hard to find a positive image for 'accidental codeine overdose no ill effects funny' so here's a puppy instead.
You always know when your drugs are good when they're handed over with the warning that, since the last time you tried them, they have become an illegal drug. They have a street value, and are illegal to carry without a valid, personal prescription. Again, these are ones that take the edge off. My favourite is an anti-seizure medication also used as a tranquilliser. If I'm in agonising spasm, this helps a bit. If I take enough of it, it knocks me out for several hours. If I take more than enough, the general feeling of dazed contentment can last a couple of days!

Zoned out in my happy place

So, why is it that EDS-ers don't respond to painkillers in the same ways as other people? It can't just be down to the fact that we're more used to pain, can it? I've tried to do a bit of layman's research into the matter, and whilst lots of different groups of medics have investigated it, there doesn't seem to be a definitive answer. The suggestion made by the BBC article mentioned above (that there may be a genetic basis) gives part of the reason, but doesn't necessarily tell us what has changed in someone's body as a result of their faulty gene which gives poor response to anaesthesia.
Some of these are very obvious (inadequate dose/wrong technique/not actually injecting into a nerve); others seem more specific to certain people (anxiety/'immaturity'/neuropathic conditions), bits of people (bifid nerve supplies/nerve anastomosis) or situations (sepsis)
Another interesting article, the abstract of which can be read here, reports a study in which there was a distinctly different response to anaesthetic from people who were diagnosed with EDS and those who were simply diagnosed as 'hypermobile' without EDS. The EDS-ers all failed to respond appropriately to local anaesthesia, whereas the hypermobile patients all responded in the same way as the control patients - i.e., normally. I find that really interesting - even where other elements of soft tissue type is similar, the neural response is different.
EDS summed up in one picture.
Other articles shared by the American EDS society all provide interesting information but none of them really reaches an answer to my question, "What is different in an EDSer's body to stop anaesthesia working properly?"

Anecdotally, it's been found that a different type of anaesthetic may help, or simply larger doses. In my experience, asking for larger doses of a local anaesthetic is hard because people are reluctant to believe that you can genuinely feel everything. I've had sedatives before now where it is far more obvious if I'm awake or not, and they've had to just keep pumping me full of sedative until I stop being a nuisance! Obviously then you get knocked out for ages (similar to taking a good dose of a tranquilliser), which is in keeping with some of the reports' findings that there may be a tipping point at which EDSers become suddenly far more susceptible or sensitive to the drug.

What I'd like to know is if there are other types of medication to which we take longer to respond. Does a high dose of something mean that EDS bodies don't react as well to (say) antiemetics, antidepressants, antibiotics, steroids and anticonvulsants mean that we just need more help to be healthy or that the body doesn't react as well as it would without EDS? Since many of the relevant problems may not be present without EDS, maybe it's a bit of both. I've certainly had times where it's taken a long time to respond to a regular dose of a drug (or I've never responded and we've had to raise the dose considerably). In fact, most of the medicines that I feel I have benefitted from at a 'normal' dose are ones such as gas and air or buccastem, where I can objectively and subjectively see a hefty placebo effect.
I'm afraid I'm going to leave it there. We're none the wiser than we were at the beginning of this post but hopefully it will have been interesting for EDSers and less odd folk alike to mull all of this over!
Oh and this made me laugh:

Tuesday, 3 January 2017


Welcome to the first blog post of 2017! After a break over Christmas and New Year, it's time to get started with the year.

I'm not really keen on NY resolutions. I want to be able to resolve to be different or better at any point in the year, not just in January, and I also want to feel that I can survive through January without feeling that something has to be changed in my life to make me a better person. I also want to accept that some things are doing OK and messing around with them may do more harm than good.
Because when you're a spoonie you can't afford to spend effort on the bits of you that aren't broken!!
Nevertheless, January is an obvious time to reflect and, more importantly, to plan. Reflection first!
If Sean Bean said it, it must be true!
  • I got good results in vaulting, dressage and jumping.
  • I got better at all of these disciplines (especially vaulting where I started from zero!) and, as a result, now have a far greater understanding and knowledge of not only the things I can do but also the myriad things I can't do yet or need to improve.
  • Fitness and health stopped wheeling being great, but I have good challenges on the horizon and some really meaty technical things to get my teeth into.
  • Plans to improve riding and wheeling are both a bit daunting and very exciting. I love a challenge!
  • I did less and less rowing. This was a choice and I did other things instead. I do miss it a bit but I'm not sure how I'd put it back into my week. 
  • Not studying felt horrid; working was mostly good. I have a permanent job lined up for 2017.
  • I'm lucky to have lots of lovely, supportive people in my life. I struggle to keep in touch with people I don't see regularly but this doesn't mean I don't care.
Read the original article for this photo here.
Main goals, ambitions and desires for 2017:
Aside from this, of course.
  • Retain vaulting titles
  • Continue to improve dressage and jumping. Compete more, gain experience, enjoy it.
  • Expand voluntary roles with the RDA
  • Use wheelchair races to raise money for our RDA group, and try to regain some fitness gradually
  • Enjoy my new job, do well at it, make a difference, offer more to the school, and stand up for my rights! 
  • Continue writing on a variety of topics. 
  • Try and stay healthy and be less gung ho about injuries and illness
  • One final bigger goal that will be revealed soon - watch this space!
Application for membership of the Rohirrim might have to wait until 2018.
Finally, if you're wondering why I called this post 'FOMO', it's because I read something very thought-provoking earlier today from one of my heroes, Sophie Christiansen. In an article in the online version of Royal Holloway's alumni magazine, Sophie gave her tips for students aspiring to compete in sports professionally:
Every athlete would say that they have to make a lot of sacrifices. I sacrificed going out quite a lot with my friends at uni – I needed to if I was going to get the best out of studying and for my sport I needed to be fresh and not tired so there are sacrifices you have to make. It’s about prioritising.
This felt really pertinent to me because before Christmas I was feeling a bit bad about all the Christmas parties and events I was missing, because both travelling to things and events themselves are too exhausting or inaccessible. Far more significantly, I also felt excluded from having a proper career, and I hate missing out on that. I felt that my disability was making me different and excluded. It was a bit like 'Fear of missing out' (FOMO) and a lot like 'awareness of missing out and resentment of same'!
Sophie's words, however, made me realise it's not quite like that. I make a choice. Either I can choose to put all my energy and money into travelling to London to go to parties, or staying up all night, or struggling through a noisy and inaccessible venue, or I can put my energy and money towards horses, training, competitions, and rest. Those are the things that can make me accept the other aspects of disability life: hospital, fatigue, restricted work possibilities, and so much more.

This makes such a huge difference. Instead of feeling that I'm missing out on a social life because of my disability, I've realised that I make a choice to do other things instead. Sometimes it's still hard not to feel excluded when others can do both, but my lifestyle is a result of my choices as well as of circumstances beyond my control. My resources aren't limitless, but their allocation is up to me. What I do makes me happy, and I have not only proud and happy memories but also good and happy relationships with so many people because I have sacrificed other stuff to work hard in sport. My sacrifices aren't just about targeting success. They're also about being the person I want to be, and being with the people who help me get there and make it such an appealing place.
In 2017 my biggest goal is to remember this message so that I feel less resentful of poor health, and more excited and positive about the choices I make. I think I can do it.