Wednesday, 30 March 2016

How do you prepare for a World Championship?

Last week was a big challenge for me - the biggest challenge of my wheeling life so far, and certainly amongst the toughest physical challenges I have ever undertaken: the World Half-Marathon Championships, held in Cardiff, Wales.
I entered the race in August last year after being sent an invitation via email. I was on holiday in France at the time, and March 2016 felt like a long way off. I was already entered for the Peterborough half-marathon in October 2015, but back in August I hadn't actually completed the full distance in Buster. I suppose I felt that Cardiff was too good an opportunity to miss, and I was also buoyed by my new-found ability to swim. I felt that I needed a really good new challenge.
"I can swim! I am amazing! I can do anything!"
Fast forward a couple of months and it all seemed great: despite an uncooperative stomach and a broken chair, Peterborough went rather well and I felt confident about future wheeling endeavours. I was aware that Cardiff wouldn't give me a PB as there was to be no separate wheelchair start (which makes the first few kilometres of the race rather hair-raising, as I discovered) but I felt confident that I'd be able to give it a good stab.
Peterborough HM
Unfortunately, the end of 2015 and the beginning of 2016 was not a good time for training. I just seemed to be under the weather all the time, and what with applying for jobs and then actually starting a job I had far less time to train. After a rather stressful Christmas, the end of March was suddenly looking a lot closer than it had before. Then, I hit a bit of a block - I just felt lousy. Pretty much everyone I know has had this virus this winter. It starts as a cough which lasts for months, and persists with general achiness, fevers, chills, loss of appetite, tiredness, headaches - the works. It's a standard winter virus but this year it seems to be affecting everyone soooo much more - we've all taken ages to get over it!
This was frustrating for me. I needed to be doing more training, and the bloomin' obstinate part of my brain was all for going out and training as much as I wanted anyway. Fortunately, that part of my brain which has actually learnt something from the repeated episodes of overtraining was able to keep things in check. I still went to RDA and I still went to the track sessions with the rest of the wheeling group, but I cut everything else right down. That meant that I was able to start a job and continue enough training to stop me from going bonkers at the same time as not making myself severely ill, but it wasn't really enough to train to be fit for 13.1 miles.
Nicely wrapped up against that horribly cold  bit of indoors. Ability to pull silly faces unaffected...
Even two weeks before the race, I still felt pretty naff. I wanted to go for a nice long push along the busway (a good 22km to cover the full HM distance) but I had no energy at all. Instead, I went home to my mum's for a weekend. This was lovely, and it was certainly the best plan I could have had for preparing for the race in terms of aiming for recovery, but it made me feel a bit worried that I wouldn't be ready two weeks later. The next weekend, I forced myself to go out and do the 22km session along the Cambridge Busway. It was absolutely dreadful. I had to keep stopping to reposition my vertebrae, and I was in agony the whole way through. I had a few moments of actually enjoying what I was doing, but most of it was hideous. I was so cold and miserable by the time I got back that I was feeling really negative about the race just seven days later. All I could do was tell myself that maybe on race day, surrounded by thousands of others, I would feel a bit more in the mood.
Of course, the psychological bonus of completing such an awful session was enormous. I wanted to give up so many times and it would have been very easy to do so - but I didn't. I kept pushing. I pushed away the pain and the inner pessimist; blocking them out with music, internal screaming (and some external screaming!) and dogged bloody-mindedness. I broke it down into manageable chunks: 1km, 100m, 5 pushes, whatever. I hated the session and I hated myself during it. I hated how slow and heavy everything felt. I hated how little I was enjoying something which I had previously enjoyed. I hated myself for making me do it, and I hated myself for being too stubborn not to turn back. The hatred sounds really bad, but it was great. I used it against myself, against the conditions, against the chair, against the distance - anything which threatened to stop me. I let myself feel the rage and I let myself use the rage I had. It turned into rage about all sorts of things. It wasn't just the cold, the uncomfortable position, or the distance. It was EDS, not being able to work properly, the reflux and sickness which form a constant feature of my wheeling. It was rage against all those little unfairnesses that we all face in life; with every angry, pounding thud on the pushrims I was working my way through it. It wasn't pretty technique and it wasn't especially fast, but the only alternative was to stop and it was quicker than that. It turned out I had a lot of anger!
I am Rage Owl.
Later, once I was drying off in the flat, I knew that it was a good thing. The race in Cardiff couldn't be that tough (could it?). I had kept going. I had beaten my body and my brain. I had achieved something awesome - yes, it was slow; yes, it was grim; yes, I finished. 
It wasn't dark by the time I finished (nor was I on the track), but it sure felt like a long time had passed.
Quite apart from the big psychological "YES I CAN" revelation, I learned some other things during that 22km. For example...
  1. The first two or three kilometres will feel very long. It takes me a while to get into a rhythm at the moment, but I don't need to worry about that. I just need to push through the first two or so miles and then the rest will feel manageable. In the first two miles, I need to keep shutting up that doubting voice inside my head.
  2. At about the 6km mark, I might get a sudden burst of joy in what I'm doing which made me feel invincible. That happened on Saturday and it felt amazing - as if I'd finally settled down into the distance. If that happens then I'll just enjoy it but also remind myself there's a hell of a long way still left to go.
  3. One of the hardest bits is just before halfway. You're tired and a bit bored and you can't believe you're not even halfway yet. On Saturday, my session was along the Cambridge busway - so I went straight out, and came straight back. I controlled how far out I went. I had to keep silencing that bit of my head that was saying, 'you won't even make it back from here - what makes you think you can make it back if you go even further in that direction?' Hopefully in a race this won't be the case. The route will be out of my control, meaning that I'll be able to accept it more easily.
  4. There's a point round about 16-17km when you feel that you should probably have finished by now, but you know there's still a decent bit of work left to do. When I hit 15.5km I knew I was about 6km from where I started. I also know that 6km is the distance along the towpath to the lock and back, or from the car park to the bridge after the first lock. It's not a huge distance but it's considerable enough to feel daunting when you're already tired and in pain. At this stage you just have to break it down into very short chunks: 100m at a time, 30 pushes, 20 seconds - whatever gets you through until you realise you've ticked off another 1km.
  5. The last couple of kms - these were awful on Saturday. I was in agony from my back and I just wanted to get home, have a shower, and spend a few hours getting everything in my body back into the right place, hopefully with lots of hot water bottles and painkillers too! Oh, and I was quite hungry. In Cardiff, though, I didn't want to feel that way. The last couple of kilometres of a road race are always the most fun - it's where lots of spectators will be. I wanted to soak up the atmosphere and feel a part of something amazing. This was certainly easier in a World Championship race than on the Cambridge Busway, virtually alone, in light drizzle!
I also met some physical challenges on the busway that I wasn't really prepared for. Slightly to my surprise, my general fitness and energy felt OK - having been under the weather for ages with viruses compounded by migraines, I've definitely lost a fair bit of fitness and in recent sessions I've really struggled with fatigue. On the Busway, though, these were not the things slowing me down! By and large, my arms felt OK too. Initially they were quite sore and tired - they felt very heavy and it felt difficult to lift them up in the air in order to come back down onto the pushrim. However, I realised at about 2.5km that my problem was that I was going for technique which is theoretically better and faster, but which I'm not yet able to sustain over a longer distance. This is something we've been working on in the group track sessions - lifting the hands up higher after the finish of each stroke, with a nice straight arm going back and up into the air.
kind of like this.
In contrast to this what I've done up until now is to let my arms bend at the elbow much earlier than they should. It's not great technique because it means my hands don't get as much height, which limits the speed and force that I can use to push down. However, lifting them out and up straight at the elbow is really difficult for me at the moment, and trying to do that for a long period of time is incredibly tiring. Once I realised this I decided that, for the time being and only in longer races, I will compromise a bit on technique. After making that decision it got a lot easier!
It'll do!
The main problem was pain in my back and the tops of my legs. I have some theories about this, most of which relate to the fact that I've been making so many changes with my seat. (One day I'll write about these as they're more interesting than they sound!) I've been trying to get my bum further back in the chair so that I can reach more of the pushrims, but this has led to my legs becoming quite pinched by the frame and my back being at an awkward angle. It's tolerable for short time periods, but after longer periods of time it's really painful. When the resulting spasm spreads up my back, it eventually starts affecting my arms and that's a real problem. I've changed my seat back for the time being. As with the arm-raising technique, I hope that eventually I'll be able to keep the changes that we'd made to my position, as I think they will make me faster in the long run. For the time being, though, they're not realistic and they're certainly only going to make me slower over any decent distance.
We also experimented with new disc wheels, but they're a change too far right now!
Something else I need to do to help with this is to strengthen my back more. I loved how strong my back felt when I got back from France in the summer - having done lots of swimming - and it definitely made an enormous difference to my comfort in the chair and, as a result, my speed. I really wanted to carry on swimming but through a combination of laziness, disorganisation and poverty this hasn't really worked out! However, Saturday's session was an eye-opener. I need to strengthen my back and I need to keep it stronger. I don't want to do any swimming in the next couple of weeks as I'm still not over the virus and I don't think it's sensible. Instead, I'm doing some work on back and core at home. I have invested in a foam roller for the first time - I'd always been convinced that I was too malcoordinated to use one but a brief YouTube session taught me a few handy tricks! - and I'm also using my Peanut ball and some physio bands to help out. Obviously you can do exercises that don't involve any of those things but my attention span isn't the greatest, so having specific tools to use and to switch between helps me to keep my mind on making sure what I do is of a good quality.
The Peanut and the Roller
The foam roller definitely helped to loosen up my back a bit after Saturday, and I hope that with some dedicated practice I'll be able to make a good difference to my core strength over the next few weeks. My swimming sessions in the summer only stretched over two weeks, and although I did spend quite a long time in the pool each day, at least I know that it is possible for me to feel a benefit after a short period of time. I'm very much a fan of marginal gains so even if a rolling session only makes a bit of a difference, that's a bit of a difference which over 13.1 miles can be quite substantial!
Other angles of attack include massage and muscle relaxant drugs. Both are great. I have a hand-held 'pummelly' massager which heats up which is really nice, some spiky massage balls for small patches of muscle tension, and also have a vaguely willing and really very competent masseur in the form of John! I'd like to go for a proper sports massage but they're quite expensive so maybe that will have to wait.

Don't try this at home...
So, those are some of the things that I need to do to know that I am physically (and mentally, as much as possible) prepared.
  • complete the distance (or ideally just over the distance) in one session.
  • loosen and strengthen key muscles in back and core
  • learn how I will feel at certain points through the distance
  • learn to adapt my technique where necessary (this also includes things like knowing how to handle hills and setting up the steering).
As well as these things, I am a bit of an organisation freak. Most of the time I keep it well under control, but when it comes to big events like these I like to make sure everything is covered. Here's how and why!
Lots of my race prep is, of course, geared towards making me faster, but I know that when I enter an event I need to make sure that I have covered all the little practicalities and that I know what I'm meant to be doing at each point throughout the day(s) of the event. The first thing is always to make a packing list, and this tends to end up rather long. I have a variety of things that I need to take for the race itself, and although some of them seem blindingly obvious ('chair'; 'wheels') I like to include them as it helps me to plan packing the car - plus it would be exceptionally embarrassing to turn up without them! For Cardiff, I also needed a flag to attach on the day and tape to attach my number to my helmet (I would have to collect the number in Cardiff rather than have it posted to me). I list every individual bit of kit that I will need, which performs two purposes: firstly, I make sure I have it all; and secondly, I make a decision about what I'm going to wear now, when I have plenty of time, instead of rushing it when I'm trying to pack up to leave. This sounds insignificant but I'm so bad at making decisions and I find it so important to be wearing the right kit that it's worth getting it right! Everything needs to be planned: leggings, socks, fluffy socks, long-sleeved top, short-sleeved top (in case it's warmer than expected), compression sleeves (in case it's even too warm for a short-sleeved top), club vest which goes over whichever top I decide upon, stretchy neck buff, gloves, watch (and charger), sports bra, lucky pants, contact lenses, warm hat, helmet, and so on!
(not my kit!) - I can't help feeling that a pair of shorts would do the job better than a loo roll...
Other essentials for racing are esomeprazole (which with any luck will keep most of my stomach contents in roughly the right place), klister (in case of rain) and sunglasses (which I barely ever wear because I don't like them falling down my face, but it's nice to have the option). I also need lots of tape (in case anything on the chair breaks like it did at Peterborough), a track pump to keep my tyres topped up, tools (especially the allen keys that get my wheels on and off), my foot rest (I've been fiddling with my feet set-up and haven't decided what to do yet), and a detailed list of timings on the day of the event, including when to go to the loo, when to get in the chair, when to warm up, where to be at each point in time, and so on. The schedule for the day is important to have so that I feel calm and in control, but at the same time I know that I need to make it flexible enough that if things have to change a bit it doesn't have a knock-on effect on anything else. Finally, I need a bag of kit at the start and finish so that I can have trackie bottoms and a zippy jumper/jacket to keep me warm when I'm not actually working hard.
There is no suchthing as 'too prepared'!
If all of this sounds a bit over the top, I think I know why I do it. On a race day (and this is true of any competition or even anything important like an audition, interview or concert) I like to know that I can focus on performance. I don't want to be worrying or wondering if I've forgotten to do something, or if I've got time to fit something in. I want to have done all of the hard work thinking about that beforehand, so that I can be sure that on the day I can just focus on the job in hand. This goes to things like setting out my clothes the night before an event such as a competition or an interview - even if I'm away from home and have barely any clothes with me, it feels good in the morning to be able to go straight to them and put them on without having to waste mental effort deciding what to wear or trying to find what I did with my top/left sock/pants. Having this level of organisation is part of the ritual for me and, although I know some people either don't need it or don't like it, I definitely need it and I definitely like it. It has to be said that I'm not perfect and nor is any system - in Cardiff I did initially leave the flag in the car, but fortunately the car was in the hotel carpark not far from the start line, so John was able to nip back and get it in time!
Aside from race kit, I also need to plan all the medical stuff I will need just for going away: primarily splints, medication, mobility aids and glasses, but 'medication' and 'splints' are such enormous categories in themselves that they need breaking down a bit too. Once I've done all of this, I can start thinking about the normal things I might like - such as toiletries, pyjamas, 'normal' clothes, a book and so on. These things are all very necessary but they are some of the last things to go in, as I know that when I need to access them I won't be nervous or in a rush - it's hard to get too worked up about brushing my teeth. I still want these things to be well-organised, but I spend far more time on carefully organisating the stowing away of race gear and medical equipment than I do on the basics - quite possibly because by that point in the proceedings I'm bored rigid of packing and just want to get on with it!
Having all of this done in advance means that on race day I can just focus on what I need to do. There are a few other things I've done or will do before heading to Cardiff which should also help. Firstly, we're driving over two days before the event itself, so that the entirety of the preceding day (which will actually be my birthday!) can be spent relaxing and resting. Secondly, I've booked a decent hotel for me and John to stay in, which is both nice and central (and therefore close to the race start) and also looks like a good place to relax. Thirdly, as part of 'general presentation' (which comes under the 'wearing the right-looking kit' part of my brain), I always like to give my chair a really good clean and a maintenance check. Poor old Buster gets quite a lot of towpath on him which I'm quite sure isn't good for him, and in any case it's good to show up with a nice shiny chair that isn't covered in dirt, klister, sticky stuff from tape, and rain stains. It makes me feel more professional and as if it is more of an occasion.
stripping out all the 'upholstery' to give the frame a good scrub...
...and taking off the front wheel to get all of this cleaned up and with oil in the right places (i.e. on the steering but NOT on the brake pads!)
There's also quite a bit of route-planning. Cardiff is quite a long way away from Cambridge (about 200 miles), and because of having to travel with so much stuff - and in particular Buster! - it's only really practical to drive. I was able to pick up my brother's old car the day before we left, which is a bit bigger than my old one. It has more space for my chairs and for all of our luggage, and it has back doors (which my old one doesn't) which will make getting my day chair out so much easier. Anyway, I needed to plot a route, and I needed to make sure that John and I were both insured to drive the new car and that I'd had at least a bit of time to get to know it before heading off on such a long journey. The journey itself proved stressful, as it seemed that the world and his wife were out on Thursday night, so it was substantially longer than anticipated, which almost saw me lose the will to carry on giving directions if not to live! We ended up taking a rather circuitous and tortuous route that drove me bonkers, but at least we arrived on the same day that we set off and we knew we had a day to please ourselves before any great exertions.
How it felt.
Apart from all this, I leave decisions for 'after the race stuff' until after the race - with the exception of planning which church in Cardiff I wanted to attend for the Easter Day service the day after the race - that was kind of important. After that we went to John's house for a couple of nights which was just lovely - I always love visiting and it was especially good because we got to spend lots of time with Kate (John's sister) and her lovely little toddler, Charlotte. Charlotte is a little menace but completely adorable!
Playing with Charlotte at Christmas time.
So, with Cardiff over, the immediate focus is Warwick. I'm hoping my mum will be planning some of the logistics for this, but it's up to me to make sure that everything is packed (luckily I already have a packing list...) and that I do a bit of training in between to keep my shoulders moving. I had one day of rest on Easter Sunday and then on the Monday I went out for a short (5km) push with John on a bike. Today (Tuesday) I did just over 10km on the track, with a mixture of drills, sprints and more sustained work. I'll try and do a little bit more over the next couple of days but I'm definitely still going into a downward taper. Hopefully all I'll have to do in Warwick is turn up at the start and push, push, push!
So, to answer that question - how do you prepare for a World Championships? Well, obviously the one I went to wasn't a 'real' World Champs! I wasn't really competing for a title. However, the event was tough (don't worry, it will be a whole separate post) and it took a good deal of preparation. These are my tips for any race:
  1. Psychological preparation is, for me, the most crucial stage of preparation. If you go into something knowing you can do it, it's a lot easier than not knowing if you can or not. Get the distance done and ideally be comfortable doing it several times and/or going above the distance. There are other aspects of psychological prep listed below, but this is one of the biggest and most important examples.
  2. Eat properly and drink properly! (Water...not booze)
  3. Take your medication! I still ended up regurgitating a lot of my breakfast (despite the 2pm start time of the race) but had I not had huge amounts of esomeprazole it probably would have been worse.
  4. Taper. Don't do a massive session two days before the race. That's just silly. Don't sit around doing nothing either, though - you'll feel stale and stiff.
  5. Know where you need to be and when throughout race day.
  6. Don't spook yourself. If it's a competition, be aware of the opposition, but 'control the controllables'. You're the main controllable, by the way.
  7. Have strategies worked out in advance to cope with difficult situations which may arise. For example: very steep hill (there were a few of these in Cardiff). Normal pushing technique will not get you up. Go one hand at a time, so you've always got some forward movement, and use the spokes to get you there. Think these things out in advance and it'll save you dithering time in the race.
  8. Use technology. Not one I've talked about much on this blog before (a future post in the making!), but having an idea of your average speed during training on the flat, on roads, on slight slopes, etc., will help you pace yourself in a race.
  9. Have a reason. Mine: my Grandad (handy reminder in the form of a Halifax bomber on my chair), my Dad, and me. I'm a good reason to finish. I would be soooo annoyed if I didn't make it.
  10. Enjoy it! This is the bit I tend to forget. Sometimes, I get so bound up in trying to go faster and faster that I forget to enjoy the moment. I need to think back to how excited I was when I first tried wheelchair racing, or when I first picked up my chair. Tap into that, and the miles go faster.

Thursday, 17 March 2016

Earning a crust

I've been in my new job for four weeks now (or thereabouts - bearing in mind I started on a Tuesday and I don't work on Fridays, I've had four weeks in school). So far, I'm really enjoying it! There were various considerations that worried me a bit about starting, but fortunately I feel that, so far, things have been kept in control. This is how...
Firstly, the hours seem to be working out OK. I'm in school Monday to Thursday, but two of those days I leave at lunchtime, which cuts two hours off the school day. There's never a dull moment and I'm always busy, which sounds like it would be tiring but actually keeps me much more energised than being bored would.
Not me!
I'm getting to know the students I work with quite well now, and as such I feel that I'm getting better at helping them in the ways that they most need. I have quite a range of students to work with - age 11-16, boys and girls, across lots of different subjects, and representing various different types of special needs. There is absolutely nothing like getting experience hands-on when it comes to working with students who have Special Educational Needs. I never felt nervous about going into lessons with them, but now that I know them better, and now that I have a better understanding both of their needs and of what I can do to meet those needs, I certainly feel more confident about making a noticeable difference. This means that I get more 'job satisfaction', which means that I enjoy the job more. The more I enjoy the job, the better I am at it - so everybody wins!
Going back to school has also been quite fun as I've spent a lot of time learning things that I didn't do when I was at school. For example, I now attend lessons on cooking and child development - which weren't offered at my school - and the science syllabus seems to have changed a lot! I also go to some Literacy Support sessions, which work with children with difficulties such as (amongst other things) dyslexia.
Ironically, this is probably a dyslexic's worst nightmare.
Since I don't have dyslexia myself, I've never really had a good understanding of what it entails and what it is like to deal with it. Seeing and experiencing the way that these children are taught to approach reading and writing is brilliant, because it's so different from what I was taught and it works so well for these children whose entire approach to language is different. I am certainly learning some very valuable lessons!
This brilliant font by Daniel Britton simulates dyslexia for people who haven't experienced it. You can work out what it says, or find out by scrolling to the bottom of this post!
Being in this job has also given me more experience of dealing with complex behavioural issues. The school I am at is very large and recruits from a wide variety of social backgrounds. Although any child can struggle with behaviour, it is often the case that those with difficult home lives find school difficult too. Learning how to support them is surely something that - like everything else - I will keep on learning until I retire or change jobs, but it's immensely useful for me to get better at it and, of course, the better I am at supporting these children the more help I can be to them. Mostly I've learned that having a firm but fair and sympathetic demeanour usually works best. You need to learn to pick your battles - if you let a minor thing slide with nothing more than a pointed look, you're more likely to have a measured response if you reprimand them more firmly for something else. I have mastered the art of the raised eyebrows followed by quick smile when they spot that I've spotted them doing something a bit cheeky! This helps to reassure them that I'm not just out 'to get them', and that I do respect them as individuals.
Being in this school has also opened my eyes to the range of behaviours (good, bad, odd, worrying, whatever) that different children may exhibit, and the reasons for that. My own school was a bit unusual - it was a selective state grammar, so although it was free we all had to pass an exam to get there. This basically meant that, although there was definitely a wide range of cultural and social backgrounds, most students behaved the same way as each other most of the time. In this far bigger school, this isn't always the way. Now that I'm beginning to get to know the children a bit better, I can spot anything which is unusual for them, and on the flip side I've also learned their favourite techniques for procrastinating! I think that my experiences with disabled people outside school have helped, as I am good at spotting things like partial seizures (which seem to pass unnoticed by many...), severe but concealed anxiety (which teachers don't really have time to spot), and avoidance techniques. I also know when a child is working really well - far better than they usually do - and I know that even if this isn't at the same standard as the other children, they should be praised for what they have done.
Something else I've learned is that I should never underestimate what they can do. Sometimes, the children can do bad things that really shock me. Happily, these are very unusual, and instead I've been pleasantly surprised to discover children who can, for example, complete complex work far quicker and more accurately than their peers despite a learning difficulty, or who can demonstrate excellent concentration when coaxed to do so by me, or who can show real creativity or excellent understanding and memory for detailed points. I don't want to underestimate my students, but on the other hand I never want to cease to be delighted when they do well. Genuine praise and encouragement are such valuable tools and most children respond really well to succeeding in a challenge which somebody (often a teacher!) thought they'd fail! It's a two-edged coin - I need to be aware of what an individual student can achieve and do my best to ensure that they do achieve that, but I still need to be suitably (and justifiably) impressed when they do well. That said there's the little ring around the edge of the coin which is the, 'well, this lesson wasn't so great, but it's not the end of the world and we can try again later.'
I think this is true of many of us, but perhaps especially the students I work with.
As well as working in lessons, I'm also getting to do quite a bit of music, which is really fun. It's nice to go and do something different and although my voice has been dreadful lately I'm quite happy singing along with the lowest parts! I even got to play a saxophone again the other day - for the first time in ages. It was tough with my left hand but not impossible, so that felt great. I'd love to get involved in sport stuff too. Various members of stuff are becoming aware that I'm a bit sporty... so hopefully I'll be roped into something soon! One of the advantages of it being such a big school is that there is an awful lot going on, all the time, and a lot of it is to a very high standard.
Access around the school is a bit tricky, but most of the time I manage just fine. My lessons are all scheduled to be in parts of the school that I can get to in my wheelchair, although there are some tricky doors at the top of ramps and weird classrooms that I can only get to by going through some kitchens! I don't really mind though, it's just nice to do what I can. Today there was an art lesson which got moved to a room I couldn't access, which was a shame, but usually it's not a problem. The school has really worked hard to make things as easy as possible for me, including attention to detail such as supplying me with a little stretchy cord on my card/lanyard so that I can reach the 'touch points' that open the doors without garrotting myself!
"This town ain't accessible enough for both of us!"
In terms of their approach to illness and medical appointments and the like, it's been all good so far. This week was a bit of a fiasco for me in terms of this - I was out all day on Monday because of an awkwardly-timed physio meeting. I went in on Tuesday but had a mild migraine which evolved into a nasty one so got sent home at breaktime. I was in on Wednesday and then again today (Thursday) but today I had to leave in my free periods to drive to a medical appointment half an hour away - which ran late so I was a bit late back into my lesson before lunch! It was a bit of a scrappy week for me in that respect but I had the support of my line managers throughout (in fact they were the ones that sent me home on Tuesday). I certainly don't intend to have many more weeks like this one but it was good that they were so understanding and helpful.
Any downsides? Well, it is tiring and it does make fitting in training and rest quite difficult. I haven't trained much as I've had the 'lurgy' that's doing the rounds for a few weeks now. I'm not too bothered about this as I have finally learned that waiting and resting is more efficient than destroying myself. It's also harder to find time to go to the doctor's, or to pop home or to visit friends! Since I'm pretty tired after each day and each week, most of my non-school time is spent resting. I don't mind that really, but it means that little jobs don't always get done.
One upside is that, for the last two months or so, I have reliably woken up early on at least 5 days of the week. I think that the last time that happened I was about 16... so it feels great! Part of it is medication-related, but having the energy to get up and go every morning (even if that energy wanes during the day!) is just such a novelty and I absolutely love it. It certainly helps that I enjoy the job so much. The people are great, the work is great, I don't really mind the commute (a reasonably long drive, but a fairly easy one, and with some nice countryside to go through). I am a very lucky lady.

Daniel Britton's font:
"This typography is not designed to recreate what it would be like to read to read if you were dyslexic it is designed to simulate the feeling of reading with dyslexia by slowing the reading time of the viewer down to a speed of which someone who has dyslexia would read" 

Dipping a toe in the film industry

Regular readers may be aware that I will be taking on quite a bit of wheely racing soon - two half-marathons in the space of eight days, to be precise. For a relative novice, this is quite a lot, especially a relative novice with decidedly dodgy health! However, I have good reason for wanting to do them both. The first is the World Half-Marathon Championships in Cardiff, Wales on 26th March. I was contacted about this last year to see if I'd be interested, which obviously I was so I booked my place straight away! Quite a bit later, I discovered another half-marathon the next weekend (3rd April) in Warwick, England. It's specifically raising money for the BHF (British Heart Foundation) and you can read more about why I'm taking part here.
I have made a little promotional video to drum up more support and more donations - and the video itself has made £100 in the last two days, so that's not bad! If you're reading this on a computer (laptop or desktop) you should be able to view it below. If you're using a handheld device (phone or tablet) you might not be able to play the link below, but you should be able to play it on Vimeo here. This video was my first attempt at playing around with iMovie so it was a bit of an experiment as much as anything!
If you'd like to donate then you can do so quickly, easily and securely by visiting my JustGiving page here. Thank you! :)

Friday, 11 March 2016

'ear 'ear

Since the middle of February, things have been really busy - mostly because I have (hooray!) started work. That will be the focus of a different post some time in the future. This is just a quick one about my hearing.
Hearing has been a problem for a while now - I wrote a bit about it here. Today, I went to see the audiologist. I had high hopes for something to help with the two most annoying problems - the excessive sensitivity to sound that I sometimes have in my left ear, and the muffled nature of all that goes on the rest of the time in my left ear. I also have quite a bit of pain but I would have settled for getting something sorted so that I can actually hear properly.
This 'revolving' hat comes 'complete' with eye glass, cigar, scent-box, spectacles and hearing trumpet, 'without the intolerable trouble of holding them'. Genius!
The doctor did a few tests on balance. He said that my poor balance whilst standing was a result of my legs being wobbly instead of my ears being a problem. He also checked for Benign Paroxysmal Positional Vertigo - you sort of have your head to one side and then lie back suddenly with your head tilted over the edge of the bed. Enough to make me feel rather sick but only because of reflux and not vertigo, so no diagnosis of BPPV.
To be honest, I feel a bit deflated. I had looked forward to this appointment, because not being able to hear properly has been really troubling me for a while now and I really wanted him to be able to make things better. As it is, the advice I've been given isn't very helpful. The doctor felt that the muffled sound in my ear is probably related to the tensor tympani muscle getting a bit unhappy (Tensor Tympani Syndrome), and the only thing he could think of to relieve that was rest. Unfortunately this has been happening for years now, and I already rest as much as I possibly can whilst still being a functioning human. I can't rest any more than I am at the moment without giving up my new job (which is part-time anyway) so I don't see how that's going to get any better.
For help with balance (and really, vertigo isn't my major issue) he suggested I keep my legs moving as much as possible. He said that this would help with my balance. I asked how I could work on the problem that most of the time when I get the vertigo it's when I'm sitting down, and he had no idea. He said that shouldn't really be an issue - which is fine, except for the fact that it is an issue! He was convinced that I should be doing more walking and that this would help my balance. I imagine that having stronger legs might be helpful for not falling over, but it certainly won't affect the vertigo (which is a spinning feeling in my head, not just my legs giving way) and it even more certainly won't help me when I'm sitting down. I politely made the point that I use my wheelchair not because it's fun but because I need it but it was obvious that he didn't really understand. He said, "I know Ehlers-Danlos isn't a lot of fun - but you'll have more problems if you don't keep walking now, and you're only 25 - you don't want those problems." Unfortunately, I'll have more problems if I do too much walking now, which is precisely why I don't. I'm aware that we should walk as long as we can, and I do do some walking. To me, this just seemed like another one of those, 'why would anyone this young be content to be in a wheelchair?' moments.
...because you can never have fun or achieve anything in life if you're a young person in a wheelchair.
Anyway, the most annoying thing for me was that this focus on whether I should be walking or not does not even begin to address my hearing problems! I asked what could be done about that and his main suggestion was to get another hearing test done and for me to get more rest. Apparently rest will sort it all out. I find this hard to believe for many reasons. Rest does not have a track record of sorting out my hearing problems. I also suspect that if a lack of rest were really the problem, I would have had some problems with my right ear by now too. I'm annoyed that he didn't address either of my two biggest concerns with anything other than 'rest'. I know that there are treatments available for hyperacusis, tinnitus and tensor tympani syndrome. I know that there are treatments available for hearing loss. It's annoying to me that I have to wait to go back and see them again before I can have another chance to ask for any of those treatments.
Pachyderm Therapy would be good.
In the meantime, I have to deal with persistent pain and pressure in my ear (which is sometimes excruciating), persistent inability to hear people properly, permanent ringing sounds which interfere with how easily I can understand people, and frequent episodes of extreme pain when my ear is subjected even to low-level noise. I find it hard to hear people now whenever I'm doing something else - so I can't hear riding instructors, for instance, or athletics coaches, or the rest of the choir during rehearsals and services. It's so frustrating.

It's not helped by the fact that I'm also having mega issues with a persistent sore throat and painful glands. My ears permanently feel as if I'm hearing things either far too clearly or nowhere near clearly enough! Hopefully things will settle down soon and then the hearing will be a bit better. Until then, I'm just trying to get by as best I can - but sometimes that 'best' is still a bit useless!

Saturday, 5 March 2016

Occupational Health assessment

The other day I went for my Occupational Health assessment, which needed to be done before I start my new job. I was quite worried about it, because there was a high chance that I would be laughed out of the office before I even opened my mouth at my temerity to suggest I could hold down a job (albeit one that is quite light on hours even when it is 'full-time'). Everything else was in place for me to start work: I had the offer, I had the DBS clearance, references had been provided, I'd planned my journey in, and I even had some new smart clothes to make myself look professional! The last hurdle was clearing the health assessment.
I did not want to do a McLellan...ouch :(
I was very nervous about it, because I want to work and so I wanted them to say I'd be OK. After doing a bit of research online, I found enough information to calm myself a bit, but I still wasn't sure what the tone of the meeting would be and how I would feel afterwards. What was most annoying was the fact that I couldn't find much information on how it feels to be the subject of an Occupational Health review - in particular a subject who really wants to be approved for work instead of signed off! Hopefully this post will give anyone else in that position a bit of an idea.
Me going into the assessment.
First of all, I had to complete online questionnaires. The first is a basic screening which most people pass straight away and then that's all they have to do. Because mine obviously came up with various problems, I then had to fill in a far longer, more detailed form. It asked about every aspect of health. I gave as much information as I could about the medication I take and non-drug treatments I receive, the medical professionals involved in my care, the more severe cases in my medical history, my health as it is now, and, of course, my mobility. There was also an opportunity to fill in a box asking what I felt about my ability to work, which was an opportunity for me to say, 'OK, so I know that it looks like there's quite a lot wrong with me, but I've thought this through carefully and I think I can make it work, so please still hire me!' Obviously phrased slightly differently...
Desperate times...
I did those forms a few weeks ago and was then invited to a face-to-face assessment in Cambridge with an Occupational Health nurse. I had no idea what to expect from him - would he be like the Atos assessor who dealt with my benefits claim (this is something I need to write about in a separate post...)? Would he be like the physio who 'graded' me for riding? Neither of those two experiences were positive in the slightest. Would he be in more of an interview role, like the people who interviewed me at the school? Or would be like one of my doctors, or perhaps the kind folk at the Citizens' Advice Bureau, just trying to find the best thing for me? I had no idea.
As it happened, he was lovely. The important lasted an hour but felt like about 15 minutes because we chatted so easily and he was so friendly. He applauded my wish to go out and work and do as much as I could. However, he seemed quite bowled over by the complexity of my case. Apparently, not many people with that many consultants in that many different fields of medicine are trying to fight to get a job. He seemed unable to find the right words to express fully his sense of being overwhelmed by my list of medication, symptoms and diagnoses. Perhaps a part of him was wondering if the job application had been done in a moment of bipolar-fuelled madness!
Like me, his main concern was that my energy levels wouldn't cope very well. Having had severe ME/CFS at school, I'm very aware of the need to pace myself and to be realistic about what I can and can't manage in a given day, week, month or even year. 'Fatigue' is even one of my main tags for these posts! There are loads of posts with me trying to make sense of fatigue and pacing, but here's a select few:
Very gradually over the last eight years or so I have learned a bit about pacing. I don't achieve the things that I'd hoped I'd be achieving by now, if I look back at my 15-year-old self, or perhaps at my unrealistic 20-year-old self. On the other hand, I am learning more and more about myself and my illness(es) which means that I am still achieving some things in life. I am getting used to the fact that I need to tone down my expectations. I no longer think that I can work a stressful job full-time. I no longer think that being in a wheelchair is a personal failing of someone who can still walk a tiny bit. I no longer think that asking for help is burdensome for others (or rather, I'm better at ignoring the voice in my head that seeks to disagree). I no longer say 'yes' to every opportunity and worry about the burnout later. The last stage is to accept that all of these things, added together, and combined with sensible action on my part, do not mean that I am weak.
Me at Para-Rowing Camp a while ago - I had a functioning left hand!
Anyway, part of satisfying the evil bit of me which says how weak I am is getting a job. Part of balancing it so that I don't burn out again (and have to stop completely, thereby confirming what the evil voice says) is finding a fine line between 'not enough' and 'too much' work. I thought I'd done that. I planned out my working hours and I planned out when I would rest, and when I would train. I felt I had it sorted. I was never unrealistic enough to think that it would be easy, but I thought that it would be possible.
The Gruffalo planner!
The OH nurse thought otherwise. To be frank, he seemed a bit appalled at the suggestion that I should work more than about ten hours a week (and even that was generous...). My contract was for thirty hours a week. I haven't worked thirty hours a week since doing my Masters - and that was an entirely different type of work! - but I felt that I could do it. I felt the job would be a bit less intense; that it would certainly be both challenging and tiring, but also enjoyable. When something is enjoyable, it is far easier to find the energy for it.
Fun time spoons :)
I think he came to this conclusion based mostly on my medical history, but also on honest discussion with me. I don't want to lie about what I can and can't do - I don't want to omit anything, nor include anything which isn't really relevant. I soon felt that he was there to help me, so his questions seemed genuine instead of me getting the impression that he was trying to catch me out. The OH nurse also pointed out another thing that had been a concern for me, which is the need to attend hospital appointments on a regular basis. He knew that I would need time off to go to see all my many consultants and to have tests done. This observation went on his form, as well as his recommendation to try me on a part-time basis first.
Some of my letters from a two-month period - originally posted here.
Going part-time had, in fact, been my intention as soon as I started looking for jobs. Unfortunately, you can't really choose what comes up and what interviews end in an offer or a rejection. I felt that the school job I had been offered would be challenging, hours-wise, but not impossible, so although it was a 30-hour contract - which is not huge at all compared to so many! - I thought I'd be OK. However, the lovely OH nurse explained to me that there was no way he could recommend that I work such hours. He'd send a report to the school which they would receive by Thursday (our meeting was on the Monday). Unfortunately, it was half-term week, which meant that nobody would be in school until the next Monday - just one day before I was due to start work - so I had an agonising week waiting to see if I would have a job or not. I sent the school an email explaining my position and my opinion of it all so that they would have that available to them on Monday morning when they'd need to make a decision.
Please give me a job...
Monday dragged on! After a few tense hours, I rang them at 10.30 to see if they'd made a decision. They agreed to ring me back later in the day. Argh! Anyway, to cut a long story short, the school agreed a 4-day pattern with me, whereby I work two half days and two full days. The half days actually involve being in four lessons (out of five) which is good as it gives me more experience and more money! I'm happy with this arrangement. It seems to be working fine so far and it's a good balance between my desire to work as much as possible and my physical capacity to do so. I've been at the school for two weeks now and I'm genuinely loving my job - it's hard work, but very rewarding and there is, to use a cliché, never a dull moment...
One of my all-time favourite photos - such happiness!