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.
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.
- 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
- recurrent/chronic injuries to joints (e.g. sprains, overuse injuries)
- poor proprioception (sense of where your body parts are)
- poor co-ordination
- 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
- 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.
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.
|Oh, it's a lovely world!|
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...|
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.
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...|
|Looking rather determined in my first half-marathon!|
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.
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:
- 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).
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|
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!|
- 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.
- 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.|
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.|
- 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!|
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?|
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.
|Getting ready to give a vaulting demo at an RDA Open Day in Norfolk.|
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