FAQs

Why 'bendy'?
I have a condition called Ehlers-Danlos Syndrome (EDS) which, amongst other things, causes hypermobility of the joints. In other words, my joints move too much - they bend far more than they should. This can be an advantage when it occurs to a limited or controlled degree, but it causes a lot of problems when you can't control it.
My wrist!
What are the symptoms of EDS?
Almost everything! There are actually a few different types of EDS. I have Hypermobility type, which is the most common. One of the most important criteria for diagnosis is the hypermobility of the joints. This is usually assessed using the Beighton scoring system, which gives you a score out of 9 for hypermobility in wrists, fingers, elbows, knees and bending over to touch your toes and get your hands flat on the floor. 
Other symptoms include:
- joint pain
- dislocations and/or subluxations (partial dislocations)
- soft, velvety skin which is very elastic, fragile and can bruise easily
- joints that click a lot
- fatigue
- recurrent/chronic injuries to joints (e.g. sprains, overuse injuries)
- poor proprioception (sense of where your body parts are)
- poor co-ordination
- weakness
- autonomic dysfunction e.g. Postural Orthostatic Tachycardia Syndrome or POTS (the autonomic nervous system controls 'automatic' bodily functions such as digestion and heart rate)
- gastroparesis (paralysis of the stomach) and reflux
- food intolerances/allergies
- bowel dysfunction
- urinary dysfunction
- spinal deformities such as scoliosis, hyperlordosis and kyphosis
- headaches, including migraine
- hernias
- weak blood vessels
- heart murmers and heart rhythm disorders e.g. SVT
- 'pes planus' (flat feet)
- problems with vision and eye health e.g. myopia and glaucoma
- tendency to develop arthritis and osteopenia
- dental problems
- Chiari malformation
- basically anything else that could possibly go wrong in your body can usually be blamed on EDS.
Some of those things are very specific to EDS. What about the ones that all kinds of people suffer from - what are they like?
Migraines can be very problematic. I often have seizure-like symptoms and these have not been adequately investigated yet, so there is a suggestion they may be part of migraine. For those not familiar with migraines (lucky you!) they are really horrible headaches which can be triggered by all sorts of things, or come on independently. Everyone experiences them a little differently, but for me they involve pain which is principally in one eye (it can be either left or right) and in the front of my head, with severe intolerance of light, noise and smells, alongside dizziness, nausea, vomiting and general misery. I take medication daily to prevent them, but even so I get them pretty regularly. I don't currently have any medication which gets rid of them, although I do have various things which can help alleviate the symptoms a little. I find that the only way to deal with them is to put something hot on my bad eye then try and lie down somewhere quiet, cool and dark and try to sleep. Another important feature of migraines which sets them apart from regular headaches is that you can sometimes get 'auras' which come before the main event. These auras can take all sorts of forms - often they are visual disturbances (e.g. seeing wavy lines, flashing lights, or black spots) but they can be more subtle, to the extent that some of the auras I get I'm not sure if I can describe in words as they are more feelings than anything else.
Regarding food intolerances, I am very, very lactose intolerant which came on almost overnight. The intolerance was so severe that I was hospitalised several times as I reacted so badly that I had to be taken in in an ambulance (or 'nee-naw', as we like to call them). They kept searching for the horrible thing that had to be wrong with me before finally deciding, after about 6 months of daily vomiting, fainting, heart problems and the like that I was just lactose intolerant. I can eat various foods containing milk now provided I take lactase enzyme first and don't overdo it. I also need lactase in order to take medication that contains lactose.
Oh, it's a lovely world!
Are there any psychiatric effects?
Yes. Being in constant pain and constantly tired is very stressful, so lots of people experience a degree of depression, anxiety and other psychiatric disorders. Alongside this, I also have a separate diagnosis of Bipolar Disorder. There's a lot of stuff which goes round about this so I suggest that you read the NHS version first! Bipolar has been a big old struggle for me. It's something I will have to live with and I'm lucky that I'm now on medication which seems to control it fairly well most of the time. There are side effects to the medication, such as nausea, fatigue, tremors, headaches, potential for hypothyroidism, liver and kidney damage, and so on. However, all of this is preferable to being very depressed, very manic, or having a mixed state where the two combine in all their glory to make you feel truly horrific. There's more stuff about me and my bipolar elsewhere on this blog, which you can find under the label 'bipolar'.
It's OK for me to wear this, right, because I have bipolar...
Why rowing?
I started rowing when I went to Cambridge as an undergraduate. It's just the thing which everyone in Cambridge should try. To be precise, I started as a cox, then had a go at rowing, then pretended to take time off the sport, then got into coxing in a big way, then got into para-rowing. Now I do a bit of both but it's not my major sport anymore as it's quite difficult for me to manage by myself - I need help with things like getting the boat out, putting the oars in, getting into and out of the boat, and so on. Why anyone else should row - it's a great sport! You can be an individual or you can row in a crew with seven other rowers and a nice cox to tell you what to do. You can row for fun or you can row competitively (which is also fun). You can push yourself physically and mentally or you can use it as a chance to switch off from the rest of your life and just think about rhythm and flow. You can row through wonderful scenery and you can make friends for life. You can get really close to nature and you're out in the elements. It feels very free. It feels great.
Why wheelchair racing?
I got into this by accident really. A rowing friend posted something on Facebook to say that there was a new wheelchair racing group starting up in Cambridge, and the first few sessions would be free try-outs. I thought it sounded like fun, so I got in touch with the organisers and arranged to go along. Unfortunately, two days before our first session I had a bad fall from a horse (yes, I wrote about that too), but undaunted I went along to the session with my arm in a sling, determined to give it a go anyway. I wasn't quick, but I really enjoyed it and had a lot of fun with new and existing friends. The next week I was tentatively pushing with the bad arm, and by the third week there was no doubt in my mind that I wanted to join the club and keep training.
My first session - watching Alice whizz round and thinking I'd never get that good...
Since then, I've achieved quite a bit. I've only lost one race so far (and in that I came second by 0.2 seconds - gr!) and have won some medals, trophies and even prize money. Much more importantly, though, I've had a huge amount of fun, gained a lot of strength and fitness, made some lovely friends, done some really fun things, found a way to get back on the towpath to coach rowing, and generally found a sport that I can do without any help from anyone else - by which I mean that I can get in the chair and go without outside help, unlike riding or rowing or indeed many other things. Obviously I still need a lot of help with coaching and technique!
Looking rather determined in my first half-marathon!
Getting better at wheelchair racing has been quite hard work. Compared to the others in my group, I had a period around April where I was one of the slowest. I was frustrated at the fact that I wasn't performing as well as I thought I should have been, so I worked hard to up my fitness and to lift some weights. I now know what helps and what doesn't, and I'm determined to keep pushing myself to get quicker and quicker.
Why riding?
Why not? Horses are lovely. I rode as a child but stopped after breaking my back aged 13. I tried to get back into riding a few times but failed miserably until starting at an RDA (Riding for the Disabled Association) group in September 2014. They took things more slowly and helped me to get to a stage where I was able to tolerate - and enjoy! - riding once a week. Now I ride twice a week, sometimes more, which I never thought I would be able to manage.
As with wheelchair racing and rowing, my RDA group includes some of my best friends. This includes parents of riders and also the helpers who volunteer their time and skills to get us riding. Again, I've had some fantastic opportunities through the RDA, including riding at the National Championships in July 2015. It was really hard work but I had a great time and would love to qualify for next year's event too.
Since starting at the RDA, my riding has come on leaps and bounds. I'm not as confident as I was when I was 13, but I'm probably more skilled despite my advanced disability. When I was younger, riding was about staying on board and just being brave. Now I'm learning a lot more about how to be a clever rider and how to work with the horse. Things that I once found easy I have to think a lot more about now, but I think I'm achieving more and getting more out of it. I never competed as a youngster (except at private events organised by my riding school) so the fact that I now ride and compete both as a para-rider and in able-bodied competitions (with the RDA and Cambridge University Riding Club respectively) is tremendously exciting.
Do you give anything back?
I gain a huge amount from other people's efforts. Almost all the sport I do relies on volunteers and I am immensely grateful to them. I like to give a bit back too, as much as I can. Here's some of the stuff I do:
- rowing: I cox and coach for a number of boat clubs in Cambridge. This involves running land training sessions as well as being in the boat or on the bank during outings to improve technique.
- wheelchair racing: I'm on the endurance committee at my athletics club as the wheelchair rep. So far I have mainly been learning how the whole endurance section of the club operates, but hopefully I will have more valuable input to give as time goes on!
- riding: I'm on the Eastern Region RDA Committee as Rider Representative. This is a new role for me and will involve me going round various RDA groups throughout the East of England to see what they get up to and what the riders want to get out of the RDA. I'm also Publicity Officer, managing twitter accounts for RDA East and our RDA group. I've also just joined the RDA National Vaulting Committee as the Participant Rep.
- outreach: as a new project, I'm getting involved with a Cambridge University outreach campaign to go into schools and talk about my experiences in sport, and to help run sporting events.

What else do you do?
Music - lots of music! I used to play a lot of instruments but as my hands are bad now I mainly sing (although sadly EDS will eventually make that very difficult too).
I also like playing with Rosie, our little border terrier. She's very cheeky and lots of fun.
When I'm not doing any of the above I'm usually seeing some form of doctor or just resting. Rest is actually quite a big part of what I do - it has to be!

What do you want to be when you grow up?
On the basis that I haven't fully grown up yet, here's this question. In an ideal world I'd be a zookeeper, but that doesn't fit too well with my disability or indeed any of my skills and experience. The real answer is that I don't know. I want a job that involves lots of practical elements and interaction with other people. I want to make a difference to people and I want to enjoy what I do. Beyond that, I don't really mind. My dream realistic job is to be a cathedral musician. I love the existing repertoire, I enjoy composing new repertoire for choirs, I like singing in choirs and directing choirs, I enjoy that aspect of worship, and I enjoy the opportunities it offers to bring more to other people's lives through education and just happiness!
Ely Cathedral with Peterhouse Chapel Choir
Who are the people we read about on the blog?

The main ones mentioned by name are:
- John - my boyfriend. We live together with one lovely flatmate. John is not my 'carer' because we don't want to introduce a word like that into the relationship, but he does nonetheless care for me and help me out a lot with everything - getting around, jobs around the home, general cheerleading! I love him very much and I'm glad I have somebody who I can trust with all the health bits and bobs but who I also enjoy being with.
John waiting for my legs to start working!
- my mum, Kathryn. She lives nearby and I see her as much as I can. She's also very supportive of everything and helps me to achieve my goals and is also there to help pick me up when things aren't going so well.
- the dog! As mentioned above, Rosie is our little border terrier. She's three now (2015) but I suspect she will always act like a puppy. She can be very naughty but she's also very good at knowing when I'm feeling rubbish and need a cuddle. She's quite lazy so she's usually up for snuggling. She makes me smile when nothing else can and although she doesn't solve problems she makes the world seem a lot better.
- riding people: Kirsty is like my horsey guardian angel. She looks after me at RDA and CURC and just generally in life as well... She's a very good rider, a lovely person, and a theology student which makes for excellent interesting chats. Gillian and Kathryn are two instructors at RDA. They are quite tough with us but they definitely get good results! Fiona is one of the instructors at CURC and has really helped me to grow in confidence as a rider. Some of the riders that crop up the most are Eleanor, Olivia, Anne and Rebecca.
- wheeling people: the group of athletes includes Alice, Becky G, MJ, Naomi and Claire. Our coaches are mostly Neil, Nigel, Becky W and Peter (Alice's dad). We have crazy fun times together.
- rowing people: there are simply far too many of these! Some of the main clubs are St Radegund, Peterhouse and Cambridge '99.
With some St Rad rowers after winning a race.
If you weren't disabled, what would you do differently in life?

Probably a lot less sleeping and hopefully I'd be a lot more productive. I like to think that my ambitions wouldn't be too different - I've always enjoyed church music, so I think that would always be an aim for me. I want to think that although the disability definitely gives me the opportunity to do new things that I wouldn't otherwise do, there aren't too many things that it stops me from doing completely.
Many things can be managed.
Favourite...
  • Food: anything I can cut up with one hand.
  • Colour: purple, but I love my bright green race chair too.
  • Animal: camel. Or alpaca. Or horse, or donkey, or dog, or tortoise, or chameleon, and so on...
  • Drink: Pepsi Max; I drink gallons of the stuff... It's my main vice because I don't drink alcohol so I feel it's OK! 
  • Film: depends what I saw most recently!
  • Piece of music/song: depends whether I'm feeling blue or happy. For the former, something like Flares (The Script) helps; for happy stuff then almost anything jolly!
  • Geeky interest - church music. I love it; I love singing it, writing it, conducting it, listening to it, reading about it, reading it from the score... (as a former music PhD student I reserve the right to be geeky about this).
Me as a cathedral chorister, aged 17 ish!
Why are your wheelchairs named weird things?
Firstly, all my chairs have names, because that way I can distinguish between them and because they are special and important to me. They are all named after planes, because why not?! This really started with the first one I got, which is a folding manual wheelchair. Compared to the Red Cross chair I had been using before, it was very lightweight, so I named it Sopwith (after the lightweight biplane, the Sopwith Camel).
See the resemblance to a plane?
After that, I got a really lightweight manual chair which is pretty tiny (it's a child's chair really but that's fine by me). It was so much smaller than Sopwith that it was hard to think of a plane that would be fitting, so we went with Brabazon. The Bristol Brabazon was a huge plane. It's kind of ironic...
The next chair was my racing chair. This one has a 'stable name' of Buster (after the go-kart that my brothers and I cobbled together as children) but its plane name is Halifax, after the Handley Page Halifax - the plane that my grandad flew in during the war. For a chair for training hard and racing hard, I wanted something personal with a good bit of fight in it. When I'm struggling in training or a race, I look down at the strategically-placed picture of a Halifax and think of my lovely Grandad, and it always gives me a little boost.
Mr Spock is my electric chair. This is indirectly named after the Vulcan, a beautiful plane which is sadly no longer flying. I did get to see the Vulcan flying on one of her final flights recently, and I'm very glad of that. Mr Spock is a very useful addition to the collection; he lives at my mum's house (in a town which is hillier than Cambridge) and is also useful for long day trips as he's a lot comfier than Brabazon.
Finally, we have Percival (Percy), my latest day chair. He's quite similar to Brabazon, but about an inch wider and with a far more comfortable seat arrangement for my lower back. He's purple too!
Getting ready to give a vaulting demo at an RDA Open Day in Norfolk.
Any other questions?
Comment and ask!

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