Mind over matter

This is a post about pain. Pain is an everyday phenomenon for people with EDS. I want to talk about what pain means for us, and why I don't mind it even though it stops me from doing loads of stuff. The second part of that will make more sense if you read the post I wrote a few weeks ago after my friend killed herself – you can find it here. It's quite long, so you can just skim it or skip it altogether if you like, but it will help to make some of what I have to say make a bit more sense. I'm also going to try and explain why I've decided to write about this today.

Anyway, pain in EDS. There are a few different headings, so I'll do my best:

1. Muscles. Muscles ache because they work super hard to hold our silly bendy joints in place. Since we always have joints, this means that they always ache. On the Beighton scale, which measures hypermobility, I have a top score of 9/9 (something I have in common with many other EDS-ers). This basically means that my 9 most vital joints are affected, which also suggests that pretty much all my joints are bad. That's a lot of muscles that are very busy doing a job they're not meant to do - instead of allowing you to move, they're trying to hold you in place, which can lead not only to general aches but also to spasms, where the muscle completely seizes up, or tremors, where it shakes a lot. Stiff spasms and muscle shakes are exhausting and painful. Spasm is particularly difficult because every time you try to move it feels as if you're tearing the muscle in half. Sometimes you physically cannot move because the muscle is just too stiff. That's not too bad if the muscle in question is an arm or a leg, that you can just avoid moving - it's much harder when it's the intercostal muscles (those that go between ribs). When they're bad, it feels as if someone is stabbing you in the ribs every single time you take a breath. It's both painful and knackering.
   
   

   

   Comes uncoloured; you colour in each muscle when you get a spasm...

2. Head. Constant headaches are a really common problem in EDS. I get a lot of migraines, although I also take medication daily which helps to prevent them. I've been on daily medication for migraines on and off since I was twelve, and I've tried loads of different types. Usually they work for a bit then they stop working and you have to try and find something else. I also have some nice strong painkillers to take for those occasions when I do get a migraine, but there's a very fine line between something which is effective enough for me and something which gives me really bad breathing problems and chest pain (tramadol!). I also have medication to deal with the nausea associated with migraine, although it can't actually stop me being sick if I need to. If you've never had a migraine, then all you need to know is that they're awful and you just feel like you want to die. I get massive pain in my head and in my eye (usually the left side). I can barely open my eyes and I can't move the eye in the socket because it hurts too much. I can't see properly, and I can't hear properly. I'm massively sensitive to smells and sounds, and even the slightest noise can make me need to be sick. Usually the only way that I can handle a migraine is to lie down in a dark and very quiet room and try to sleep it off. If I feel one coming on I can sometimes prevent it by getting something to eat and drink, taking some painkillers, and lying down for a bit. Often this doesn't work and I just go into extreme pain and sickness mode. These days I get migraines like this a few times a month. In the past I was getting them every other day. They really affect productivity and general quality of life! Of course, migraines aren't the only type of headache that EDS-ers can get, and you don't have to have EDS to get a migraine - it just seems to be pretty common.
   

   

   I wish my headaches were this adorable.

3. Joint pain. This is separate to muscle pain because the muscles hurt in between joints, but you also get severe pain within the joints themselves. This can involve any tissue found in a joint. The pain can come from injury (whether acute or chronic, both of which are daily problems in EDS) or from the fact that it simply isn't shaped properly - for example, lots of EDS-ers have bones that aren't shaped properly at the ends, which can cause a lot of problems. It puts more strain on the joint and increases the risk of dislocation or subluxation (partial dislocation). EDS introduces you to pain in joints that most other people aren't even conscious of, and it can be really disabling, because the natural inclination is not to move a painful joint. My worst joints are in my spine (not helped my serious lumbar fracture, aged 13), both wrists and my fingers (too many years of playing musical instruments), my left hip, both knees, ankles and bones in the feet, both shoulders, and my TMJ (temporomandibular joint, or jaw in laymen's terms!). This doesn't mean I don't get problems with my elbows or my right hip - I do, just not as often as the others mess me around! The pain I have every day in these joints, coupled with the muscular pain, explains some of why I need my crutches or my wheelchair.
   

   

   This person has pain in all these places. Amateur!

4. 'Innards'. Visceral problems (problems with bodily organs) are common in EDS. I get pain in my stomach and intestines quite a bit, although I'm luckier than some because I can at least still eat naturally without needing a tube. It's not particularly pleasant though, and you need to be able to run to a loo in case the combination of dodgy stomach and pain gets overwhelming! I also often get heart palpitations, especially if I'm feeling a bit under the weather. These aren't necessarily painful but they can become so if you ignore them for too long. Infections are often worse for EDS-ers, so a throat infection may reach the lungs. I'm lucky that I've not had that so far (touch wood!) but I have had infections in the trachea, which can really affect your breathing and give you bad chest pain. One big consequence of pain coming from the torso is that it can make you feel even worse than 'regular' muscle or joint pain. For example, if your stomach aches and your intestines feel as if they're trying to squeeze a bowling ball through them then you won't really want to eat much, which won't help you in the long run! These internal pains are really difficult to deal with, because other people can't necessarily see them, even though to you they are huge.
   

   

   That's not good...

5. Skin hypersensitivity. Sometimes, just existing is really painful. You might be having a good day in terms of pain in the muscles/joints/stomach etc., but for some reason you just can't bear the touch of anything on your skin - it's too painful to wear a jumper. You might get into the shower and realise that the feel of the water going onto your face is too painful to cope with. This is so annoying! It feels completely ridiculous and since it isn't really socially acceptable not to wash or not to wear clothes you just have to get on with things. But can you imagine how painful it is if someone brushes past you on a train, when even wearing a coat is causing you immense pain? It sounds silly, and it is silly, but then EDS-ers aren't meant to be normal.
   

   

   No further comment needed.

6. Neural pain. Now, this is really hard. Lots of people with EDS have some neural pain, but a lot more research is needed into neurological symptoms in EDS. Pain coming from the nerves can be unpredictable (earlier today, I picked up the loo roll in the bathroom and caught a nerve in my hand which was sooooooo painful and made me drop the loo roll in the bath!). It often feels like an electric shock - which isn't pleasant at all. It often comes on from the slightest things (really, how heavy is a loo roll?!). On the other hand, it can be more of a consistent thing. Some of the neurological symptoms I have had are: intense feelings of burning on the skin - as if someone has poured boiling water over me; electric shocks running down the arms or legs, and often going over my head and down both arms; stabbing feelings, often in the hands and feet; tingling, pins and needles or numbness in any part of the body; random twitches of arms and legs which can be violent; feeling as if I'm wearing a very tight glove or very tight socks - a painfully constricting feeling that can lead to numbness; feeling as if there are little creatures marching up and down on my skin, or just underneath it; muscle fasciculations under the skin; permanently twitching nerves (e.g. a nerve on the side of my hand twitched all day, and my eye twitched for over a month); and probably many more that I can't think of off the top of my head! Neurological symptoms are by definition involuntary. They're really annoying and especially so when you are trying to get to sleep but can't stop your leg from jumping up and down. They drive me bonkers and can also massively affect your strength in the affected part of your body - so, for example, when the nerves are bad in my arms I can't hold my arms up to brush my hair, put a jumper on, reach things off shelves, etc., nor can I grip things which is really the basis of doing most things that humans ever want to do. Simple every day tasks like getting dressed, eating a meal, having a shower and opening a door become really tricky.
   

   

   Better in the sky than in your body!

So, a lot of EDS treatment is about managing pain. Until we change our DNA, pain is going to be a permanent feature of our existence, and it's better to manage it than to give in to it. I've had quite a bit of treatment to help me manage the pain (endless physio, acupuncture, orthotics, taping/bracing, operations, drugs, CBT, all the para-sport I do, and so on). These have had mixed effects. Generally I feel quite positive about pain (see the last bit of this post for why!) so I try not to moan too much. One of the things I've found most helpful is to keep a Pain Diary. It's not a riveting read, but it's really useful for me: I give a score out of 4 (where 4 is maximum pain and 0 is no pain) to my back, legs, hips, knees, feet/ankles, arms, wrists/hands, head/eyes and 'other'. The only ever category that ever gets 0 is head/eyes but I'm hoping one day I can put that down for another category! I also note my activity for the day - exercise, but also how much time spent sitting down (because that really hurts my back), standing up (hurts my legs and back), working at a desk (bad for shoulders), and so on. I also record what I did (if anything) to try and reduce pain (e.g. taking painkillers, doing some stretches, having a lie down). That way, I can look for patterns which provoke or reduce pain. I can also see how I'm doing over a wider time period and look for larger patterns. Another thing that is useful is when I write about more unusual symptoms - when these come up again months later, I can go back and see how often they're coming up, and if anything might have caused them. I can also see how I described the pain or weakness last time, and see if it's the same or if it's evolved a bit. This is really useful for me because I would never remember my pain day on day for months on end - and it's really helpful to take to doctors! I also record all my medication in it, which is the other thing that doctors always want to know wherever you go.

I said I'd write about why I'm talking about pain today, so that's the next bit:

Having had my arm feel a bit better, yesterday I tried to push myself around a bit in Sopwith, my wheelchair. Big mistake! It felt OK at the time in my bad arm, although the grip in the hand was really weak so I needed some help. However, later in the evening it was apparent that my bad arm was substantially worse than it had been before (the good arm was fine, so I know it wasn't just a fitness thing). It has now seized up a lot and the nerve problems are really bad again. It's really painful all the way round from hand to shoulder. Today is also more painful than usual for my legs and my back, so I am struggling a bit. That's why I thought I'd write about pain.

So, why do I feel OK about pain? Surely that's a really perverse outlook?

The simple fact is that I also have bipolar disorder, which has caused me more pain than anything that EDS has managed. With EDS I have had dislocations, subluxations, fractures, breaks, more sprains and muscle/ligament tears than I can remember, constant muscle spasm, nerve problems, difficulty breathing, difficulty eating, difficulty thinking through a migraine or looking out of eyes I can't open, BUT all of these things pale compared to the pain of bipolar disorder.

This is not quite what it's like. Polar bears are good though.

I'm not saying that EDS pain isn't real or that it isn't substantial and really difficult to live with. it is all of those things. But, for me - and I emphasise that this may well be different for different people - I think it is far easier to live with physical pain than with the mental pain (which could manifest itself physically) of bipolar disorder.

Bipolar made me want to die. It made me not want to see people I cared about ever again. It made me believe that the people I loved hated me. It stopped me from eating, it stopped me from going out, it stopped me from knowing what was real and what was not. Most of all, it stopped me from being me. I ceased to be myself because my brain had been taken over by something which had nothing to do with me. It was like I was possessed.

EDS has never done that. EDS challenges me on a daily basis. EDS is a huge part of me - it is quite literally in my DNA! - but it has never taken me over. It has never been more than me in the way that bipolar was.

For the last few years, I've been able to sort my life out a bit thanks to lithium, which is something of a wonder drug (if a last resort drug) for people with bipolar. I still take it, and I'm still grateful for it. By massively diminishing the problem of bipolar, lithium has given me the strength to tackle EDS, which in turn gave me the strength to tackle para-rowing, riding for the disabled and wheelchair racing - not to mention postgraduate study and everyday life.

The ironically volatile lithium.

I still sometimes get down, but it's nothing like before. The agony I felt whilst at my lowest points with bipolar simply cannot be put into words. I have never, ever felt worse than when I no longer knew who I was, or what around me was real, or who amongst the people I cared about was actually alive. It's that kind of pain which is impossible to quantify. It's that kind of pain - pain so absolute that no words can do it justice - that I am more afraid of than anything else in the world. I know no grief that has come close to it, nor any physical pain, or any anxiety or sickness. When I have known such pain, how can I complain about physical pain?

Physical pain is hard. It's tiring. It can make me vomit, or make me pass out. Sometimes it makes me cry. It stops me from going out and doing the things I'd like to do, and it stops me from being as helpful to others as I would like. But the thing is that, however much pain I'm in, I'm still me. When I had bad bipolar, I wasn't me. Retaining a sense of self is the most important thing you can do to secure your happiness - because how can you be happy when you aren't you? If there isn't a 'you' in existence, it follows that it is impossible for you to be happy. Sure, you can't be sad either, but you can't be happy. You can't be anything. Your body exists physically, but it is independent of you.

Excuse shaky hand - meds.

EDS should not destroy people in the same way, but it can. I am determined that however much pain I'm in physically, I will remember as best I can that awful, fathomless depth of misery which defined me before. I am no longer defined by pain. I am defined by what I want to be, what I can be, and what I show myself to be. And that is many things, but it is not pain.

Wheelchair racing - first two sessions

Thanks to the good folk at Cambridge and Coleridge Athletic Club, supported by Sport England, I and a group of other full- and part-time wheelchair users have been having a go at wheelchair racing on our Monday evenings. The first week was wet and the second week was freezing but that hasn't dampened our enthusiasm! Here's how we've been getting on...

David Weir - inspiration!

Week One
We started off by learning a bit about the sport from two current wheelchair racers at Cambridge and Coleridge. It turns out that there's a lot more to it than just sitting in a different-shaped wheelchair and pushing yourself along. First off, there are two main types of chair for non-amputees like us - sitting and kneeling. One of the girls demonstrating had a kneeling chair, but the rest of us opted for the sitting position, which is more comfortable if you have any feeling in your legs - however sporadic or weak.

The first difficulty with it is getting into the chair. It's quite a tight squeeze! I'm in the smallest type of chair the club has and it's definitely not dignified getting in or out, especially given that my legs are really shaky and it's hard to poke my feet through the right bit and sit down with enough force to get my bum in the seat. Unlike a normal wheelchair, which is just a seat on wheels, these are designed so that your bum sort of sinks into a pouch. You then lean right forwards, with your feet up on a little foot rest, and get strapped in at the back, so that you can't really sit up properly.

A picture speaks a thousand words!

We also got introduced to the special gloves you have to wear. I think it is fair to say that I am not a fan of the gloves. Most of us have struggled to get them on, and it's especially tough to pull them on when you don't have fantastic strength in your arms/hands. Once you've got one on, it's impossible to do anything with that hand, so they have to be done after you're in the chair and have your helmet on. Also, you can't use a gloved hand to put the other glove on, so teeth are very helpful - fortunately this is something I've also used for riding gloves for a long time...

The idea is that you fold your fingers down and strap them in, out of harm's way (getting caught in the spokes wouldn't be great). The gloves also give you a firm surface to push against. However, they take a lot of getting used to and at the moment I just find them really uncomfortable. Moan moan moan! I'll get used to them soon.

Little fingers go in the flexible leather bit and fold into the palm, then the other three fingers in the harder section fold in and the strap comes round and fastens around the hand and over the thumb.

Pushing a racing wheelchair is pretty different to pushing a normal one. Part of this is the position you're in - in a racing chair, your body is much lower to the ground, especially the shoulders. In a normal wheelchair, you grasp the push rims around the edge of each wheelchair between your hands, starting at about 10 o'clock (or more if you're super flexible :D). In a racing chair, you don't 'grasp' at all, you just push, and you start at 1 o'clock, but aim to finish the stroke with the arms much lower around the wheel. The main thing I'm struggling to get right at the moment is the hand angle - but hopefully that will come with practice.

Me in action! I should probably have the body a bit lower, but I did have my left arm strapped across my body, which stopped me from leaning down too far. Looking at it now, I could definitely have tried harder though!

One of the things I find hardest is that when you've leaned right over it collapses the chest and stops you from breathing easily. This is so contrary to everything I've ever been taught in any other sport that I'm struggling to reconcile it with really going for a lung-busting session. I have a singing lesson on Thursday - my first since starting wheelchair racing - and I'm looking forward to hearing my teacher's take on my new breathing posture. On the plus side, he might once have played a tenor role in an opera which required him to sing massively high and long phrases whilst being bent double, but I fear that any request for help in that regard would have to come with A LOT of explaining...

Anyway, pushing with one hand was quite fun, even though it was slow and I didn't go in a straight line. I went home keen for my arm to get better asap so that I could be a bit more like the more experienced people, who were actually going fast enough on their laps to be a blur:

There's a long way to go until I'm at this stage, but I'm looking forward to the challenge.

Week Two
Our second week started with that old undignified act of getting into the chair. It was as tight a squeeze as I remembered, and the gloves were still horrific. On the first occasion I was lucky, since I only had to wear one glove (I had busted my left arm - see previous post! - so wasn't using it), but for the second session I decided that alternating pain and lack of sensation were less irritating than only using one arm, so I wanted to use two. Getting the glove on the bad hand was a right palaver because I couldn't actually use my arm to push my hand into it at all. After quite a bit of inadvertently biting off chunks of velcro I finally managed to have both hands in gloves, and could shift the focus of my complaining to how uncomfortable my hands felt in the gloves. It took a long time for the feeling to go away in my good arm, but I was relieved that the feeling in the left arm wasn't so much of an issue! It made pushing difficult, but at least it saved everybody else from all my belly-aching.

To be fair, I wasn't the only one channelling good old Mr G about the gloves!

We headed out to the track, to see if the chairs really had been set up to go in a straight line. The short answer to this, discovered on the first 100m run, was 'no'. The longer answer was that they were a lot straighter than the previous week, but that there was still the potential for the hilarity of starting in lane 1 and ending up in the sandpit.

Everyone loves a sandpit.

I soon realised that one of my biggest problems on steering was that I tried to sit up too tall as I started pushing - I was trying to breathe, and see where I was going, but all that happened was that there wasn't enough weight going down into the front wheel, so I was just jumping it across and heading off in the wrong direction. All very frustrating. Once I'd realised what I was doing, I was able to correct it, and as we all set off again for another 100m straight I felt like I was finally beginning to get the hang of it. Halfway down, I vaguely heard the coaches telling me not to lean back, and I thought, 'OK, that makes sense, that's what I thought I was doing wrong - lean forward!' I leaned forward and pushed over the line feeling quite euphoric. I then executed my expert turning manoeuvre - you lean back a bit and then go as if to perform a wheely, pushing/stopping on the rims so as to jump the front wheel across.

Here is a skilled woman doing it right.

Unfortunately, what I hadn't realised as everyone was shouting 'don't lean back!' at me was that my anti-tip bar had fallen off 50m down the track. This meant that, in my enthusiasm, I leaned back too far until suddenly, I had flipped it. I tried to push myself back up and failed miserably, so instead just waited there, lying on my back with my arms outstretched and my legs up in the air, laughing uncontrollably at the thought of what an idiot I must look (as one particularly kind-hearted friend said, 'you looked like a turtle'.) Sadly, everyone was far too busy dashing down the track in extreme concern to help me back up to take a photo of this ridiculous incident (believe me, if there had been a photo, I would have put it up here).

It was a bit like this, but I think I looked sillier.

After that little mishap, I was a bit more careful about how I turned round (unlike in a normal wheelchair, you can't just push one one side and pull on the other to scoot about). The session continued without further incidents, partly because after that I took myself off the track for ten minutes to adjust my footplate to a more comfortable position, meaning that for ten minutes everyone else was pretty much safe. At the very end we had a final 'race' and I accidentally (honest!) veered into one of the others. However, it was the friend that called me a turtle, so I didn't feel too bad.

Looking forward to next week now!

With Rebecca - who also goes to my riding group and who didn't call me a turtle!

Taking a tumble

There's an old saying in the equestrian world: 'it takes seven falls to make a rider.' I'm pretty sure that I picked up my allotted seven (and then some!) in childhood, and until last weekend I can't remember when I last fell off a horse. The internet is full of people proudly proclaiming that in 20 years of riding they've only fallen off four times. It does make me wonder if they've only ever ridden completely bombproof horses or have never been over a jump or outside an arena, because all of my falls have occurred when one or more of the following conditions coincide in the stars:

1) riding a young or nervous horse
2) attempting something (usually a jump) that I shouldn't have
3) riding out in the countryside on a horse who suddenly decides that trees (or birds, or fields, or wide open spaces, or stinging nettles, or grass, or just about anything completely innocuous and very familiar) had suddenly become TERRIFYING.

This time it was dust. Next time it will be his own hooves.

If these things happen it doesn't mean you're necessarily going to fall off. I was always rather proud that I had quite a good seat, and that I was pretty good with young horses. However, the laws of physics dictate that if a horse does something really unexpected and dramatic, you may well find yourself briefly levitating before coming down with a thump. This is basically what happened to me the other day...

I was going to try out a young (5-year-old) horse to see if I could help with caring for her and exercising her. It sounded like a nice idea, but I knew she was fairly green, and my main concern was that I wouldn't be able to handle her on the ground with my uncooperative body. Funnily enough, I was less concerned about riding - I thought that would be OK. I was wrong! The day I went to try her out, it was blowing a gale across most of the country. If there's one thing that almost every horse hates, it's wind. You'd think that animals spending a lot of time outside would get used to wind in the same way that rain and sunshine do not cause any adverse effects, but no. Wind is terrifying. The stable yard where this horse lived wasn't too windy, so I felt reasonably confident that all should be OK.

I watched the owner ride the horse round. She looked fresh and fast, but not too skittish. The owner came back in from the arena and asked if I wanted to give her a try - of course I did! She warned that the wind was much stronger out in the arena. We swapped the stirrups over (I have toe cages to help stop my feet sliding through when I can't feel my legs properly) and I prepared to mount. My first warning should really have been that the horse didn't want to stand still to let some stranger get on board. It took a while to get me up, partly because of me but also partly because of the prancing steed! However, I did eventually get up and settled and walked gently into the arena.

Well, the owner definitely wasn't making up the strength of the wind out there - I couldn't believe how windy it was! I was trying to keep the horse calm by talking to her in a relaxed, low and smooth voice, but I could barely hear myself over the wind. For about five minutes we just walked gently round the edge, doing nothing more than letting her get used to me, and me desperately trying to get used to her. I was reluctant to use too much on the reins and the bit, because she was so young. However, I definitely didn't need any leg to keep her going. I tried to sit nice and deep in the saddle, to make my body feel heavier and more grounded, hoping that this would keep her calm.

This isn't the one I fell off - but I don't have a picture of her, so we'll have to make do with the pony who lived next door. Somehow, I think most horses would be terrified of this little chap.

In retrospect, I should probably have been a big stronger with the hands. I was riding with a very light touch, and maybe that didn't help. In fact, in retrospect, I probably shouldn't have clambered on at all! We managed to have a couple of trots, but each one got very fast and very strong, and it was an effort to get her back down to walk. Suddenly, as we were walking, there was a huge gust of wind, and the horse just bolted.

I think it was only a few seconds between the horse bolting and me falling off, but that was enough time to think:

1) Argh!
2) Sit deep
3) Keep toes up (I didn't manage this one too well, which is why I have the toe cages on my stirrups. If I'd had better leg/foot control I might have been OK, but there we go)
4) Pull back on one rein to try to bring the horse into a circle so small that she has to stop (unfortunately, the only way I could turn was to the inside of the galloping loop we were on, because that was my only strong arm - ideally you turn a horse bolting in an arena into the fence and pray they don't try to jump it).
5) Sudden realisation that nothing I'm doing is going to help
6) Curse the wind for not having died down at all
7) Brief moment to consider bailing out
8) See fence rapidly approaching, note horse's willingness to jump this if needed (there was NOT a good landing on the other side)
9) Another brief moment when you realise that this can only end one way...
10) Resignation to one's fate...
11) Thud.

I think I looked a bit like this.

Beyond the points described above, I don't remember a huge amount about what happened, because it all happened so quickly. I know that I hit my left shoulder on a fence post as I went down, and that the first thought after 'Oh, I'm on the ground' was 'owwwwwwwwwwwwwwww my arm!'. I couldn't feel my hand and I couldn't move my arm at all. Whilst I sat still for a moment checking that the rest of me was OK (it was, or at least any pain which I felt later on was masked at that moment by my arm) the owner and another rider caught the horse and helped to calm her down.

My initial thought was that my arm would probably be OK again quite quickly - I've had plenty of falls before, and although this was a very fast fall on to something uncompromisingly solid I felt that the injury probably wouldn't be too severe. As I got up to walk away (legs worked!) I realised that my phone had been flung out of my pocket - it also managed to work its way out of its case, which is a wrap around one that holds in place with quite a strong magnet. I was also pretty sure that my pocket had been zipped up, but whilst I was puzzling over that I took a few more steps and realised that my glove was lying on the ground too. It hadn't occurred to me that my painful hand which I couldn't move had had a glove on a few moments before until I saw said glove lying on the ground. Now, these are children's gloves which I'd had for years, and they were pretty tight, so I was impressed that my shoulder had been hit so hard that my glove had flown off. Impressed, but also slightly concerned, because the pain was not going away at all...

It was a bit like this, but more painful and less magical.

Anyway, off we went to hospital. Funnily enough, we went to what was being presented in the media that day as the worst hospital (especially A&E) in the country. Perhaps because of this, it wasn't very busy and I think I had really good care. The X-rays showed that miraculously nothing was broken, but it was clear that I still couldn't really move properly or feel anything properly all the way down my arm. I was told that the nerves had been mangled in the shoulder and that I needed to wait for the swelling and bruising to go down before they began to feel better. As my mum helpfully pointed out, I had at least managed to hurt the arm that was already pretty useless! I still couldn't move the arm at all. so I was given a sling and packed off home with strict instructions to rest, come back if it didn't get better, go to the GP when the swelling had gone down to get the nerves checked properly, and never to go near a horse again. Well, they didn't quite say the last bit, but I would have forgiven (and ignored) them if they had! The first bit of bruising was on my fingers (which had swollen up massively in the immediate aftermath) but that's gone down now, and now my shoulder and upper arm are taking over the revolting colour aspect of the injury.

So, tonight I'm getting back on a horse for the first time since the accident. It's the first time I've ever fallen off and not got straight back on, but I really wouldn't have been able to, and the horse wasn't really in the right state for that either (i.e., still cantering around the arena). For the first time ever, therefore, I'm slightly nervous, but I know that getting back on in an RDA environment will be safe and will hopefully give me the confidence back straight away. At least I know I followed this bit of advice:

I love how unconcerned this horse is.

This hasn't stopped me from doing too much yet, mainly because I'm lucky to have people willing to ferry me around. This happened on a Saturday, and on a Monday I went wheelchair racing. That is, I didn't actually race anyone, but I had a go in a racing wheelchair and laboriously pushed myself round an athletics track with one arm and one helpful boyfriend to help with steering. More on that soon - I need to do some work now!

This just sums it up so well!