Wednesday, 25 November 2015

The view from the other side

Over the last few months, I've been taking on the role of Men's Coach in my boat club. Prior to this they hadn't had a formal coach overseeing all of their training. I was warned that they could be difficult to work with, that there were divisions within the squad, that there were inflated personalities from some and crippling lack of confidence from others, and that I would have my work cut out. However, I also knew that I had been asked to 'take them in hand' by members of both the women's and men's squads, so with any luck I'd have at least some support within the squad for the changes I wanted to make.
Apparently this applies to coaches too.
My first challenge was persuading them that erging might be a good idea. For non-rowers out there, an erg is a rowing machine and it forms an important part of training for rowers at all levels, from complete beginners to Olympians.
Some of the reasons I had for people not wanting to do ergs were:
  • it makes me feel sick
  • we don't have time
  • it's really bad for technique
  • no-one will want to do them
  • we're fit enough already so we don't need to do ergs 
  • and so on!
With commendable amounts of patience on my part I managed to persuade the more vocal ones that they did have time, that erging wasn't bad for technique, that quite a few members of the squad did want to do them, that erging wasn't just about fitness and in any case fitness is not something where you ever reach 100% (you can always improve) and that if they were feeling sick I would see that as a good sign that they were trying hard. We negotiated a night for erging and I promised that I would make it relevant both from a fitness perspective and a technique perspective. Training on the ergs is actually excellent for technique as it allows you to isolate each individual and get them to work on their own technical weaknesses, whilst also being in the kind of space where you can physically demonstrate or even gently manhandle them to get them to do the right thing!
To start with, our erg sessions took place quite late in the evening (after most people had eaten) so I kept them fairly light on the exertion front, but heavy on technique. We now have a much better time and I can work them a lot harder with a much lower risk of them heaving up their evening meal! There are quite a lot of basic things that we've been working on improving, such as posture, sequence and application of power. I've been really pleased that so far there have been massive improvements in all of these things from everyone who has been coming along.
Meerkats, with their excellent posture, have featured highly.
As well as technical aspects, I've been working on their general fitness for rowing. Every so often we do circuits as well as erging (or sometimes instead of it completely), with emphasis on activities which improve fitness but also improve performance in the boat, either by gaining more flexibility or by strengthening the muscles we need to use when rowing. The circuits sessions are quite nice for getting people working as a squad, because then they know that they're all doing the same thing and going through the same tough parts. It's also a good way of keeping mental focus - useful when most people are training after a full day at work.
One day I'll get them dancing! If it's good enough for Team GB...
At the moment, I'm getting all those who want to race after Christmas to do a 2k test. This is a standard test in rowing and is generally considered to be one of the most unpleasant things you can put yourself through. 2k is long enough that you can't sprint it all the way, but it's not so long that you can really settle into anything other than a very high rate of exertion. We did a bit of work to prepare people by doing three 1k pieces, which gave them an opportunity to test their fitness and see how it feels to try pacing themselves, and also gave me a chance to work out some target splits for them in the 2k. A few of them had already done a 2k before but I was rather surprised when they went over at r.26 (which is not race pace at all). They were given a slightly lower target split than the average they'd achieved at r.26, because I wanted them to row at at least r.30 and therefore to go quicker on average. One in particular will have a much lower target split than his previous time, since he got off the erg twice in his previous 2k which is Not Cool at all! We had the first round of 2ks last night and they all did really well. I was particularly chuffed when one novice demolished his target split, and was delighted as a result. One of the more senior rowers also worked bloody hard to keep his rate up and to be beautifully consistent throughout, which was everything I'd asked for from him. Even our (female) cox did a stonking erg!
Read more here.
As well as running these land training sessions, I've been going out alongside them in Buster, the racing chair. In Cambridge, most rowers are coached from the bank. The river is too small and too busy for launches to be safe, so coaches almost exclusively train from bikes on the towpath. Being in a racing chair is quite a nice experience for coaching. It's slower than a bike, so a bit harder work for me (although obviously technically it's easier for me as cycling would be too difficult!), but the main advantage is that you're much lower down, which gives you a brilliant view of the rowers - a much better view, compared to bikes, than you might expect. I feel that I can get in and really see how they're moving.
Not like the old days of horseback coaching!
So far the towpath has claimed one victim of my chair, which was the front tyre. I have a new tyre fixed now and it's much better pumped up than the old one ever was, so in a way I suppose it's helped! I've also been out in some really grotty conditions which have seen both me and Buster coming home absolutely caked in a layer of sandy mud. I bought some car shampoo and used my old club's pressure hose to clean Buster, but didn't have a chance to have a shower until the evening so kept finding bits of sand in my hair throughout the day!
I also do quite a bit of work from home. I couldn't be at their most recent race as I was coxing the women's crew in the next division and I didn't think I'd be back in time. Instead, they had a video from the cox's head, which was really useful both in seeing what the rowers were doing and in hearing the cox's calls. I still need to give the rowers some feedback other than 'not a bad effort', and some feedback for the cox will be incorporated into this weekend's Club Coxing Workshop, in which I'll be giving a presentation on coxing head races on the Cam (this sounds very specific but it's still come to 68 slides and counting!). Devising outing plans for sessions I can't be at (either because of other training or illness), researching ideas, and providing online feedback is all stuff that I can do when I'm sat at home unable to move, and it feels good that so long as my eyes and brain are semi-working I can still be involved.
Me coxing the women in a Bumps race.
So far, I've enjoyed working with the squad, although there have undoubtedly been many challenges and a few clashes of personalities (unfortunately for the chaps involved, I'm pretty stubborn too). Broadly speaking though, I've found a really good attitude from across the squad, with some of the less experienced members in particular really taking it upon themselves to improve technically. Our main cox, Helen, has been instrumental in keeping the squad going. She devotes a lot of time and energy both at training and in an organisational role. She always cares about her rowers and puts a lot of effort into ensuring that they're getting a good outing and that they're feeling good generally. I'm very lucky that I can rely on her to look after them when I'm not around - she's a 'safe pair of hands' (which is an excellent quality in a cox) and has the knowledge and initiative to lead a good outing.
I want them to be as happy as these guys! Usually that comes through winning ;)
So, that's been taking up quite a lot of my time! There are always emails to send and questions to respond to, and even though I said at the outset that I didn't want to be organising their training, I still end up organising bits of it and it still is quite a big administrative undertaking. As with Helen, I'm lucky that the Men's Captain, Craig, is very keen and (broadly!!) competent, and takes charge of a lot of things so that all I really have to focus on is the quality of their work. I'm definitely enjoying working with them and getting more out of them. I would like to see them making more definite technical changes on the water soon, but I'm a realist and I know these things take some time. My long-term goal is Bumps next summer, and although there are plenty of races to work for in the meantime I'm not going to panic about the rate of progress just yet. For the time being, I'm happy that there is progress and that there is generally a good attitude in the squad. Coaches can't ask a huge amount more.

Tuesday, 17 November 2015

A Mighty Collaboration

Recently, I sent in an article to a website called 'The Mighty'. They publish articles by all sorts of people with experience of disability - whether it be their own disability, or that of friends or family. They have all sorts of suggestions of what to write about, but one suggestion especially interested me: write a letter to someone who you wish knew more about your condition.

There are all sorts of people that I could have written to, but eventually I chose to write to myself, aged 17. Below, you can read the original version, and you can find a slightly edited version on The Mighty's website here. I hope to write some more pieces for them soon.

me, aged 17.
Dear Lizzie, aged 17,

Things seem pretty bleak right now, don’t they? You’ve been through a lot in the last year, and although I know you wish you weren’t here, here you are. You’re still alive and there is a part of you that is clinging on, even though you don’t want it to right now.

I know you can’t see through until your 18th birthday in a few months’ time. I know how hopeless it feels, to know that you will be in hospital when your friends would be out drinking. I know how hard it is to feel that you can’t even contemplate surviving that long. I know how isolated you feel, knowing that part of you is relieved you will be in hospital, instead of having to act like other teenagers. I know how you feel that you are being left behind in life because your illness is taking ‘Lizzie’ away from you, and turning you into someone unrecognisable. I know that you want to be rid of it all, and I know that you believe the only way that that can happen is to die.

I’m not going to lie to you. Your health problems will never go away. You will struggle many times in the future, and you will have times when you feel even worse than you do now. But the thing is, you will survive what you’re going through now, and you will survive those times too. You may not want to survive, but you will eventually find purpose in life. You will find some reasons to live; some reasons to be happy.

Your physical health will deteriorate further, and it will do so for the rest of your life. Things will get hard, but you will grow in tenacity. You will learn to demand what you need, and to ask for help when that battle has become too difficult. You will learn to trust other people so that you can seek help and accept it without feeling guilty. You will struggle, but you will get better at coping at the same time. The more that life throws at you, the harder you will struggle. The harder they throw that ball down, the higher you will bounce back.

Of course, it won’t always be like that. There will be times that you will want to give up, and times that you try to do so. It’s never going to be easy living with a combination of serious psychiatric and physical disabilities. However, you’re stubborn, and your obstinance will help you. When you are bereaved, you will find solace in activities which you haven’t even tried yet. When all your hopes and plans for the future are destroyed by illness, you will find other ways of making your mark on the world. When you think that you are unlovable and that you do not deserve happiness, you will find someone wonderful who makes life bearable. Some will be closer than you think.

Don’t change what you’re doing now. It may not feel like it, but you aren’t stagnating. I know you want to go to Cambridge, and I know you’re frustrated that you can barely stay in school. I know you want to work hard, and I know it’s infuriating that you can’t stay awake long enough to do any homework. I know you want to be a musician, and it hurts that you can’t physically play anymore. I know you want to run again, and - for a while, at least - you will do so. After that, you will find even better things to do, which you will enjoy even more.

I know you don’t know what you want to do in life. Don’t worry though - you still won’t know what you want to do by the time you get to my age! However, you will have had so many wonderful experiences that you will have endless possibilities to feel happy and fulfilled - you will achieve things you cannot contemplate right now, and you will learn to feel again. You will learn to feel happiness. You will learn to feel love. You will learn to feel contentment. You won’t always feel happy, loving and loved, or contented - that would be unrealistic - but you can still have those moments which make the fight worthwhile.

Life will throw many more challenges your way. You will lose people you love, and your health will get worse. However, you will become more resilient, and you will cope better. You will be happier. Don’t give in: I’m living proof that you can do it. Finally, be kind. Be kind to others and be kind to yourself. Love as much as you can. You never know when things will change. “This too shall pass.”

With love from Lizzie, aged 25.

Wednesday, 11 November 2015

New sections: Equestrian Sport and Contact

You can now use the tabs at the top of the page to learn more about getting involved in equestrian sport and to find out where to find me on twitter.

Coming soon - how to get started in wheelchair racing.

Riding kit - starting out

NB - because they have good photos, a lot of the images in this post have been taken from Robinson Equestrian's website. They're a good place to go if you're thinking of starting riding.

When you first start riding, it's worth asking to borrow a riding hat and a pair of boots, as these can be quite expensive. Close-fitting trousers are best to wear, ideally without seams on the inside leg as these can rub and be painful on your skin, and your trousers should allow you to bend and move as much as possible. Jeans or shorts are definitely not suitable, but tracksuit bottoms are adequate. On your top half, long sleeves are advisable (to protect arms in the event of a fall) and anything with a zip or buttons up the front should be done up at all times so that your clothes don't flap (which could potentially scare the horse). A pair of gloves is sensible.
The umbrella is optional!
If you decide that you like riding enough to continue, it is worth buying some of your own kit. This can be expensive, but some things can be bought relatively cheaply, such as jodhpurs (special riding trousers; tight and with no inside seam) and riding gloves (which usually have added grip on the palm and fingers, as well as extra padding between your fourth and fifth fingers, as the reins pass through here if you hold them conventionally). You can search online for these things or find them in equestrian shops or even some sports shops (e.g. Sports Direct).
Jodhpurs have extra padding inside the knee to prevent your leg rubbing on the saddle.

Other items it isn't safe to skimp on, particularly helmets. You should never buy a second-hand helmet as you can't be sure that it hasn't been damaged in a previous fall - any damage is often invisible. The best way to buy a helmet is to go to a good tack shop and have it fitted specially, so that you know that it is comfortable and the right size. Many stores offer a hat-fitting service, but if your nearest one doesn't then consider taking someone along to help, or read this or this first. There are various safety standards relating to helmets and to ride with the RDA (and most other riding schools) your hat will need to satisfy those standards. They change from time to time but the most important ones are PAS015 and ASTM F1163:04a. From 2016 onwards, most riding schools and competitions will not accept hats which only conform to (BS)EN1384 (if they also conform to, say, PAS015 then they will be accepted). This isn't because this standard has been proved unsafe, but for complicated legal reasons that you can read about here or here.
 Being measured for a hat.
There are two main types of helmet: 'riding hats' (which have a peak) and 'jockey sculls' (which don't). Which one you go for is mostly personal preference. You can add a colourful silk to a jockey scull, or you can dress it up for competition with a black or navy velvet silk. Most riding hats are designed so that the peak will fold (a bit like a crumple zone) if you land on it, but some people feel that there is still an increased risk of whiplash with those hats over jockey sculls. What's most important is that the hat you choose fits well, is comfortable, conforms to the main safety standards, and is brand new.
Jockey scull with black silk.
Riding boots are also specialised, although depending on your level of leg control you may be able to use regular shoes. For example, because I have toe caps over my stirrups I could, strictly speaking, wear standard shoes or boots. In general, though, you will need something with a small heel (i.e. not flat trainers) and a relatively thin sole. The heel is there to stop your foot from sliding all the way through the stirrup, which would be dangerous in the event of a fall and would put you off balance in your riding. You can buy short boots which cover the ankle ('jodhpur boots') or long ones, which come up to just below the knee.

Again, this is usually a matter of personal preference, although in competition there is a convention that older riders wear long boots and younger riders wear short boots. Short boots can also be paired with 'chaps' or 'gaiters', which are made of leather or synthetic material and cover the lower leg. They're useful in providing a bit of extra protection for your leg if you find long boots difficult to wear, and it can be a lot cheaper to buy short boots and chaps than a pair of long boots.
Jodhpur boots and chaps

As mentioned above, gloves are specialised in riding too to provide extra grip and padding on the parts of the hands which are in contact with the reins. Gloves are useful not only for keeping your hands warm but also from protecting them from chafing. I find that I prefer to ride without gloves as much as possible, but in winter I need to keep my hands as warm as I can, and in competitions it is usually a requirement that you wear gloves. Most of the time, it comes down to personal preference once again.

You can also buy body protectors, which are sort of like armour! They protect your torso and sometimes your arms if you fall off. As with hats, it's sensible to buy them first hand only so that you know they haven't been damaged. Body protectors come in two main types: a foam-based item or a compressed air system which automatically inflates if you fall. The latter is more expensive, but is very efficient. Most RDA riders don't use a body protector as a matter of course. If you choose to do a lot of jumping (especially cross-country) then it may well be worth considering buying one. Again, it's advisable to have one fitted properly.
Once you've ticked the following things off your shopping/borrowing list you should be good to go!
  • jodhpurs
  • boots
  • helmet
  • gloves
  • long-sleeved top/jacket

Sunday, 8 November 2015

New sections: FAQs, site navigation and links

Now you can get the answer to all those things you had been wondering but were too afraid to ask. Well, some of them anyway. Here you go!

There are also two pages of links: one for internal pages, and one to external websites. These links are very new so there might be a couple of errors - please bear with me if there are; I will sort them as quickly as possible!

Sunday, 1 November 2015

New 'About me' section

I'm adding stuff to the blog! There is now a new section, 'About me'. Enjoy ;)

Early psychiatric stuff

When I was in sixth form, I got very ill and nearly died several times. This wasn't just related to EDS. A lot of things suddenly bubbled up out of nowhere and before I knew it I was sitting listening to a psychiatrist make a phone call down to the ward to prepare a hospital bed for me for immediate admission. I was a complete mess, partly because I weighed very little. Numbers (e.g. weight/BMI) are usually avoided in discussions of this nature but suffice to say that I was so thin that my admission was dealt with as an emergency because of concern that I was at high risk of cardiac arrest. This was because my heart muscle had grown so weak that the doctors thought it would stop completely.
I remember those first few hours in the hospital more vividly than anything in the preceding year. I remember unpacking some belongings in my room; being told that I wasn't allowed to walk anywhere (because of my heart); having loads of blood taken (they tried to even it up a bit and take some out of my right arm too, but the vein 'collapsed'); having my blood pressure, heart rate and body temperature constantly monitored; having somebody alongside me for every single minute; passing out and waking up surrounded by doctors and nurses; wires and tubes and cables and confusing medical paraphernalia; new medication. All my memories are visual. I don't remember what anything smelled like or sounded like or felt like. I was too numb and, frankly, too sick. I just have snapshots in my brain. It's not a huge amount to go on, but it was the beginning of the rest of my life.
and many 'Diet Cokes' (which I wouldn't have before hospital; they had a calorie in them).
I was diagnosed with severe depression, which in turn had caused 'atypical anorexia', although it was perhaps only atypical because 'anorexia nervosa' has come to be known simply as 'anorexia', which is a bit of a misnomer. 'Anorexia' on its own is a symptom, not a disease, and it simply means 'loss of appetite.' 'Anorexia nervosa' is the loss of appetite owing to nervous reasons, e.g. fear of becoming fat. Anorexia alone, therefore, is a common symptom of depression and indeed many other illnesses, such as migraine or the flu. My anorexia was very severe, though. I had completely lost the desire to eat. I never felt hunger because my body had gone well beyond that stage. I had ground to a halt. Eating just seemed so unneccessary. The problem is, though, that if you stop yourself from eating (whatever your reasons) eventually your brain starts to lose the plot. All you can think about is food. You go into starvation mode and your body and mind constantly crave food and seek it out. This did happen for me, but in a weird way. I wasn't physically hungry at all - although I was literally starving to death - but I did think about food all the time. I read recipe books as if they were novels. I found food strangely fascinating, even though I had no desire to eat it. I completely lost the ability to see food in a normal way.
Me when presented with food.
Alongside this, I had a massive exercise addiction - which certainly made the whole thing look like an eating disorder! I exercised not because I felt that I was fat - I knew that I wasn't - but because I enjoyed it. Exercise was something I'd always done and it had always made me feel better about myself. In the early stages of my illness (a year or more before my admission) I began to feel that I should exercise more often. I began to set my self-worth by it - my value was proportional to the amount I exercised. I ran every single day, except for the odd day where I would swim instead, or perhaps go to an exercise class. That was fine, but I didn't allow myself any days off. For months and months and months I trained every day, through illness and injury, and with no end goal in mind. I was doing it for the sake of it. It got worse and worse as I ate less and less. This is where it all links in. The depression got worse, which made me lose my appetite more. I ate less, so I got physically more ill and also mentally more ill. Because I was getting ill and was feeling really depressed, I felt that I should exercise, as that might give me some self-esteem, and might make me feel better. In reality, of course, self-esteem is something I've never got the hang of, and all that happened was that even on the 'good days' when I ate 100 calories I was still forcing myself to go running.
Not exercising became a terrifying prospect. If I could see a day coming up in the next month where I might not have time to fit running into my schedule then I would panic about it incessantly until I'd figured out a way round it. This panic would result in panic attacks and being physically sick. It was an absolute phobia of not exercising. Things began to get silly. I would 'store up exercise in the bank' by completing as many star jumps as possible while people were out, or by running up and down the stairs at home. I was in agony, of course, but my brain was strong enough to force me to keep going. Some days I'd do silly things. Instead of spending time in the library at school, working for my AS Levels, I'd run down to a swimming pool in town and go swimming for an hour or more. I joined gyms on free week-long passes and base my day there instead of at school, only staying in school for lessons but spending the rest of my time at the gym. Exercising made me feel calm. It was the only thing in all this time that made me feel better. On days where I wouldn't be able to exercise until late afternoon, I felt sick throughout the day. Running made me feel in control again. The problem was that, despite these seemingly positive aspects, it didn't make me happy. When I'd started exercising, I'd just feel relief - relief that I was finally 'scratching the itch.' As soon as I stopped, I would have a brief period of euphoria where I felt that I'd done my duty for the day, but this would soon give way to deep discomfort and misery as I considered the fact that I still had all the days of the rest of my life that I had to get through as well.
I don't think I have a particularly addictive personality. I've never smoked, I've never drunk alcohol regularly (and indeed I now don't drink it at all), and I've never really been addicted to anything else in a serious way. That exercise addiction, though, was bad. It was total and complete. It absolutely consumed my life. It was far, far more troubling to me than any other aspect of my depression. It was, of course, made harder by the fact that I wasn't eating properly. To get an idea of this, try forcing your body to exercise, constantly, even when you're sitting still (e.g. by jigging your legs). You exercise all day. Even in bed at night, you tense your muscles as long as you can. You don't sleep because you don't eat, so you can exercise throughout the night. All of this you do on, say, an apple a day - until apples become too much effort, so you go for a bit of just drinking some diet coke. Do you know how many calories are in diet coke? Even if you drink several cans a day, you're coming out at <10 calories. Exercise as an addiction isn't too bad - many think. It's free so doesn't ruin you financially. It doesn't affect other people (unlike smoking, drinking or substance abuse). A little bit of exercise is a good thing.
Relatively safe exercise.
That's why it's dangerous. The first doctor I saw, I tried to tell her about my exercise addiction. It was SO difficult for me to do that, because, as you remember, it was the only thing that I thought gave me any self-worth, so to offer it up for somebody else to destroy was terrifying. Her response was very dismissive. She felt that exercise was a good thing and she would never encourage a patient to do less of it. She suggested that maybe I should eat more. She didn't understand the problem at all. Perhaps, if she had, I would have been a bit less close to death when I finally saw the psychiatrist, but she didn't. As it happens, it's OK, because I didn't die. I'm not typing from beyond the grave! But this is why an exercise addiction is so dangerous. It can utterly destroy you. Exercise is meant to be good for the heart, but mine was ready to give up. I had severe palpitations all the time. I was fainting all the time. My bones were so weak that when I had a DEXA scan done I was off the charts. My muscles had completely atrophied. Physically, I was close to death. Mentally, I was close to death.
The depression I had was interwoven with this exercise addiction. The desire to exercise came from having a really bad level of self-esteem, and from a perfectionist personality - both of which are commonly seen in depression. I was also diagnosed with Borderline Personality Disorder (BPD), which interweaves very neatly with depression, anorexia and addiction. The problem is that they all fed each other. I was depressed, so I ate little, so my appetite dropped even more, so I barely ate anything at all, and I became more and more depressed (the brain just can't function if it isn't fed). Without food to fuel me, my excessive exercise was taking me to the brink physically, but it also took hold of my brain, told me lies, gave me false promises, and tortured me night and day, making the depression worse and worse. The less I ate and the more I exercised, the further I sunk into depression. Finally, we reached a point where my body stopped working.
I thought that I was hiding my depression and the other struggles from the rest of my family and friends. Turns out I was wrong, and I'm thankful that my mum dragged me to a doctor. It was one of many times that she has saved my life. This is what it felt like for me back then - or rather, it's the closest I can get to it, because I don't remember it too well.

- Tired (mind and body)
- Slow (mind and body)
- Cold (always so, so cold)
- Heavy (limbs felt heavy)
- Confused
- Absent
- Pain
- Weak
- Nothing.

The biggest thing I felt, emotionally at least, was nothing.


- Muscle weakness
- Paraesthesias
- Headaches
- Blacking out and collapsing
- Heart palpitations
- Low blood pressure and very low heart rate
- Slow breathing rate
- Low body temperature
- Periods stopped
- Dry skin, with no colour in it
- Shaking
- Absolutely crushing fatigue that I fought against constantly to keep on exercising.

The physical things all make sense. What I want to try and get across is just the emotional nothingness of it all. Was I frightened that I had gone from running about on a handful of carrot sticks to being told my heart was ready to stop? No, not really. I didn't care. Was I frightened about going into hospital? Nope. Was I sorry for my parents and my family? Well, this sounds awful, because I'm very sorry for them now, but at the time the rational part of my brain was not functioning and so no, I wasn't even sorry for that. Was I scared of the future? No. Was I glad I was getting help? No.
Smiling is just a way of arranging parts of your face. It doesn't mean that you're happy.
Not being frightened didn't mean I was brave. Not being glad didn't mean I was ungrateful. I wasn't being thoughtless because I was selfish. I was simply oblivious. I simply felt no emotions, and this is the thing that people find hardest to understand in depression. They think it means that you're sad, or angry, or anxious, or any number of other negative emotions. Obviously, it can mean those things, but for me at that time it meant nothing. I literally felt absolutely nothing. It was as if I were simply a puppet being guided by somebody else who made all decisions on where I should go, what I should do, and what I should say. My body was just an empty sack being controlled by something completely different. This wasn't a paranoid sensation - just the sensation that I was completely separate from my surroundings. I didn't need to have an emotional response to them because I wasn't actually there doing the things. Sure, my body was there, but *I*, Lizzie, wasn't.
There are quite a few of these 'is this how you smile?' photos.
This sensation had come on so gradually and so imperceptibly that I didn't actually realise it at the time. I think other people saw it in me. They saw that 'Lizzie' had gone. My mum talked to the doctor about me, referring to me as 'Elizabeth', and said that it felt wrong to call me 'Lizzie' as the person who was sitting in the room with her wasn't Lizzie. I didn't care. I just felt numb.
"I just don't know anymore." But you can get good at hiding it!
It wasn't just an emotional numbness. Sensorily speaking I was numb too. I heard things as if I were underwater, and it took me ages and ages to process them in my brain. I'd sit and listen to my friends talk and nod along having no idea what was being said, because I just couldn't process the information. I would look at words on a page for hours and not know what they meant, because although I could see their physical shape I could not make any sense out of what I was seeing - not only could I not distinguish one word from another, but I didn't even know that what I was seeing was a word instead of a picture, for example. Other senses were just overwhelmed by the endless cold that saw me wrapped up in millions of layers even in mid-summer.
Like the middle of an onion. Sorry for the dark humour.
It's so strange to be like that, and even stranger, really, that I had no concept of it at the time. The only reason I know that it happened is because as I began to take antidepressants I suddenly started to feel again, and I realised that for months and months I'd felt nothing. Feeling again was a double-edged sword. I had no control over my emotions at all. They'd swing around crazily, and sometimes it was as if I were being pelted with emotions all at once, so that (for example) I'd be feeling immense love and affection for someone and simultaneously be crying my eyes out in desperation. Starting to feel things again was weird, and I wasn't entirely sure I liked it. Depression is bad when you can't feel anything - it's clinically very serious - but at least it's more boring than anything else. I could never work out whether being able to feel the bad things so sharply was better or worse than not feeling anything at all. I know one thing: it was definitely more human. The medication made me more human, but it brought its own troubles.
Little green happy pills.
After a while I was trusted to go home for a night. I remember wanting to show my family how far I'd come. I no longer felt cold all the time, so I didn't need hot water bottles, extra heating, and lots of layers. I was able to sit outside in the garden in the sunshine with everyone else. I wanted to show them how much easier it was for me to eat. I remember that the breakfast I had to have included a glass of fruit juice (I'd chosen grape, as a change from apple in the hospital) and also a bowl of cereal with milk. I had never had milk before being in hospital, so I didn't know at that point that drinking fruit juice immediately before milk would make me violently sick. When we went back to the hospital later that day, we had to tell them that I'd been sick, and I had to try and convince them that it hadn't been intentional. Fortunately, my mum was able to back me up that I had always had a proper phobia about being sick, and I think they sort of believed her. I was gutted that I'd been sick, and made sure I ate more later in the day. Going back to the hospital felt easier, though - I'd managed at home for about 24 hours.
The day of my discharge from the hospital, I was so nervous. Discharge was by no means promised at that point, but I was desperate to go home. I felt really sick, I was so nervous, but I managed to force down some breakfast and by lunchtime I was on my way home. I felt so confident about the future. I thought that everything from then on would be easy, and that I'd be better quite quickly. I already felt a hundred times better than before, and I expected the trajectory to continue.

I was wrong!
I tried really hard, but improvement slowed, and as I realised that things weren't getting any easier I began to lose hope. That was the point at which things really nose-dived. I was still at a very low weight and suddenly I was now dealing with some very uncomfortable feelings. I was also exhausted all the time and was putting myself under way too much pressure. I was going into my last year at school, and my head was full of university applications, coursework and exams. I was diagnosed with ME/CFS, since despite eating better my energy levels were extremely low. I went along to various therapy courses at the hospital designed to work on things such as self-esteem and obsessive-compulsive behaviours.
The groups were a bit like this, except nobody was a primary colour.
The OCD course was actually really helpful, even though it took me a while to be able to implement the changes needed in my life. I hadn't realised how bad my OCD was until the course - I felt that the exercise addiction had been my main problem, but now that that was gone (thanks to the ME) I was quite straightforward. Actually, as it turned out, OCD governed huge amounts of my life. It governed what I ate, but it also made me do lots of strange behaviours, such as touching everything with both hands, walking with an even number of steps on rugs, starting with a certain foot when going up or down stairs, and so on. These things were all subconscious - I did them without realising - so I didn't think they were troubling or needed addressing. As soon as I was made aware of them, however, I realised that they were affecting my life. Although it had previously been going on subconsciously, I was now aware that everywhere I went I was looking at where I could put my feet so as not to feel panic rather than looking at the people I was with or my general environment. I realised I wasn't actually experiencing life properly, and I could be so obsessed with my footfall on a pavement that I didn't look out for traffic. I hadn't realised how totally it had taken me over, and how ridiculous it felt. Challenging my OCD for me was quite difficult, because it wasn't a case of challenging a belief. For instance, for some people the desire to touch things twice comes from a fear that something bad will happen if they don't, whereas for me, it was just that not doing so made me feel really uncomfortable, to the point of physical pain. I didn't need someone to come in and tell me I was being silly or that I had an unreasonable belief - I knew I was being silly even though I didn't have an unreasonable belief. I just had to train my brain not to feel uncomfortable about certain things. This took so much practice and my brain fought me every step of the way. Even now, I find myself wanting to do things evenly, but if it becomes conscious I always fight it.
It's not all about cleanliness!
Two other forms of my OCD were actually based on unreasonable beliefs. The first was that I couldn't criticise anything. For example, if I saw something in a shop that I didn't like I had to lie or try and say something neutral or mitigating ('it's not that bad' or 'it's OK') if asked my opinion. I felt as if the object could hear me and would be devastated if I said it was hideous. It was really bizarre, but that was one of the funny beliefs I had. It wasn't that I thought that said jumper would then leap up and attack me - I just didn't want to make it feel bad. It was part of a much larger part of depression which is the fear of letting others down, associated with the fear of being weak, or of being a burden, and a neurotic desire to help others at one's own expense. It was just a bit weird that I had copied this behaviour to items of clothing as well as human beings.
"Yes, really, I think it's lovely."
My final form of OCD was by far the hardest to attack, and is the only one that I really still suffer from. I had various things which I felt I had to do in order to save people I knew. For example, I'd have to turn a light off in order to stop my brothers being killed in a car crash. Yes, it makes no sense, but once the idea's in your head, what do you do? It takes so little effort to turn the light off, so you do it, because if it can save lives then you should. Everywhere I went, all day long, my brain would be telling me that people I loved would come to harm if I didn't do certain things. I was driven to do some really odd things and some really dangerous things because of it. This was unbelievably difficult to fight, because although I knew that the belief was silly I was also absolutely terrified of the consequences. Telling yourself not to touch things twice because it's OK to feel pain is one thing; telling yourself not to do it because it's highly unlikely that your family will die as a result of not doing it is another thing entirely. If this doesn't make sense, don't worry. It's mental illness. It's not meant to make sense. This is one area in which I still have to be quite careful. I've managed to silence the voice a lot of the time, but I still can't resist it very well when it does reappear.
I've often wondered whether some of my weirder OCD traits are a part of bipolar disorder. The bipolar diagnosis for me took a little while as my symptoms weren't completely clear. Having started on the antidepressants (fluoxetine) in my first stay at the psychiatric hospital, I was now getting strange episodes where I felt as if my brain was short-circuiting. I don't want to say it felt like energy - I was so tired all the time that it wasn't quite that - but it certainly felt as if my brain were powering away sending unnecessary signals which resulted in bizarre mental images, strange beliefs, feelings of panic, and so on. In discussions with my psychiatrist, we were able to identify other times in my life when I'd felt like that. For instance, there were times as a child (aged 11 or 12) when I would stay up all night and write music. I wouldn't use a computer or a piano or any other instrument - I'd just sit with manuscript paper and a pencil and scribble down all the notes that were teeming in my head. The resulting music would be impossibly difficult and I wouldn't be able to play it unless I were in that mood again. After contemplating a diagnosis of schizophrenia, my psychiatrist and another who was roped in for his opinion decided upon bipolar disorder. It was at this point that I began to take some mood stabilisers as well as the antidepressants.
The problem with mood stabilisers is that they are very sedating. They are much better at bringing down highs than they are at bringing up lows, so you spend a lot of time feeling naff and tired. Because of the ME, I already felt naff and tired all the time. ME was really, really difficult. I'd been so energetic before, but now I couldn't do anything fun. I went to school as much as I could (usually about three days a week) and when in school I did as much as I could. In the past, that meant a bevy of extracurricular activities alongside a full timetable, but now I was giving up subjects and had given up every single extracurricular I'd ever done. I didn't go to Music lessons, as I felt I'd probably pass the A Level in that anyway, but tried to attend most of my History, French and Economics lessons. The rest of the time I slept. I was given permission to go and sleep in the sick room whenever I needed to (including during my lessons). As soon as I was home from school I would lie on the sofa falling asleep in front of kid's TV - unable to do any work - until I ate my tea, after which I would go straight to bed (usually at about 7.30 pm). At the weekends, I no longer went to music school in London or sang in the cathedral choir or went out with my friends. The most I could do was some homework, and usually even that was beyond me. I just slept.
It's not much of an existence for a young person. All I did was schoolwork and sleep, with a weekly hospital trip thrown in for good measure. I didn't go to parties, I didn't play sport, I didn't go shopping, I wasn't in choirs or orchestras, I didn't stay at friends' houses. I didn't really do anything. I had naively thought things would get easier when I left hospital in the summer. It was now approaching winter and I wasn't getting better. If anything, I was getting worse. My appetite had disappeared, as had my desire to live. My mum kept fighting for me but I wouldn't have been able to do it alone. She booked me in to see all sorts of people. I remember one night in October or November 2007 when she told me she'd managed to book me in to see a doctor who she thought might be able to help. I asked her when; she said it would be March next year. I wanted to say thank you but all I could do was cry, and when she asked why, I told her the truth: "I don't want to be alive then." I couldn't face the thought of living that long.
It's hard finding photos of a time when you did nothing.
Not long after that I went back into hospital. I didn't really want to go, but it felt right. I felt that it might have the same dramatic effect as last time. I was really hopeful - but it didn't. The people I'd cared about so much had moved on, and somehow everything was immeasurably harder instead of easier. All I wanted to do was sleep, but they kept waking me up to take blood and check my blood pressure and so on. I felt more and more tired and despondent, and they were powerless. It was a harsh awakening for me. I suppose I'd thought that they'd have a magic pill or something to treat me with; to give me energy back and to make me happy again. Realising that they didn't, and that I'd have to continue to fight for the rest of my life, made me wish that my life could end rather soon. I was on suicide watch. This meant I had somebody with me 24 hours a day. They watched me sleep, they watched me eat, and they watched me in the bathroom. That was about all I did. I felt I should be talking to them but I had nothing to say. It wasn't that I wanted to kill myself - I didn't actually have suicidal intent, I don't think. It was just that I really, really wanted to die. My doctor called it a 'passive death wish'. You're not actively going to take your life, but you wish somebody else would do you the favour. I suppose it can turn into an active wish quite quickly if you get frustrated.
I was at home again not long after. I was disillusioned. Hospital hadn't saved me that time. I needed to get on with life. I submitted my university applications. I had an interview at Cambridge, and was subsequently offered a place. I was doing OK in work at school - just about keeping up. I'd managed to settle into a routine whereby I'd always have Wednesdays off however I felt and my mum and I would go to the gym together (she was working part-time because of me) and I would try to do some very, very gentle exercise. I would spend about 5 minutes walking on the treadmill, then maybe do some weights, then we'd have a very short swim then relax in the sauna. It wasn't the workouts I'd become accustomed to, but it was enough that I began to regain the tiniest bit of strength without utterly exhausting myself and becoming bedridden again. The sauna felt amazing. I would stretch out on the wooden slats and relish the strange sensation of the pain of a bony body pushing down into wood combined with the creeping relaxation that unwound my muscles and my joints. The smell in there always seemed to clear my head, and it was in these brief minutes that I would, fleetingly, find a degree of ease with myself.
At the Leavers' Prom, which I attended briefly!
I don't remember much of my time in sixth form. The first year, I was getting ill, and the second year, I was asleep most of the time. I know I did enough to get into Cambridge. It is both something of a miracle and also a testament to my teachers that I managed to achieve that goal, which had been the ambition since I was about 10. Since then, it hasn't been plain sailing but I have now carved out a new life. However, how I fared when I got to Cambridge is a story for another time.