Sunday, 25 October 2015

Crumbling - Part 2

In Crumbling - Part 1 I mentioned a bit about how I felt about my PhD. That was easy to write about. This bit was much harder, and has taken me a very long time to write. It's not particularly cheerful, but it's honest.

So, here's the gritty bit. I recently had my application for Personal Independent Payment (disability benefits) turned down. This is because, apparently, I can walk over 200m and have good strength in all my body. Neither of these things is true. They didn't take account of what I'd told them, and either they ignored what the physiotherapist who assessed me had to say or she told them things that weren't true. It's a bit of a bummer because I desperately need some more money. I've been living off savings for months now and I can't do that indefinitely. It's also a bummer because all of the money I need is related to two big facts about disability: 1) you can't work full-time or even part-time because you can't be reliable and 2) being disabled is expensive!
"My word, Dorothy, that's a lovely chair!" - "Oh yes, Bernard, but now I can't afford to eat."
For example - I can't cycle to places like most other people in Cambridge do, and I have limited pushing power in a day chair around town so I have to drive everywhere. I can't take advantage of bulk buy offers at the supermarket unless I have someone with me, because I can't carry more than a bag's worth of shopping to my car (and that's with it sitting on my lap and trying not to spill it everywhere). I can't use the special wheelchair trolleys at the supermarket because they don't fit my chair - in fact, they only fit onto the kinds of chair that you're unlikely to be pushing yourself in anyway. If you want to be independent, you also have to limit yourself. I have to spend money on medication, physio tape, orthotics, shoes that fit AFOs (£350 worth so far), food that I can eat safely and at regular intervals, staying warm, keeping on top of fluids, exercising, paying for blood sugar needles and test strips, maintaining my wheelchairs, charging the power chair, and so on.
If I had a dog I could get so much more food. Except for the fact that I still wouldn't be able to afford it.
The other aspect is care. Although I have no learning difficulties (which can lead to very high care needs), I still need a lot of care from other people - far more than you might think given that on here I manage to maintain a fairly independent image. The fact is that there are lots of things I can't do for myself around the home. I can't cook at all - I can't chop things up, I can't lift pans, I can't stand at the hob, I can't pour boiling water (last time I tried it went all over my hands, not that I felt it). I can't even eat most foods by myself, because I can't use a knife and fork to chop things up. I'm good at chopping things with the side of my fork, but there are some things you just can't eat that way. Whenever there's a choice, I will choose food I don't need to chop up, but sometimes if you're out you don't have that option. It's a bit embarrassing being the 25-year-old who can't chop up her own feed but will happily sit and discuss Thomist philosophy on resurrection.
It gets even more embarrassing, however, when you consider the 'bathing' and 'toilet needs' sections. I have to sit down in the shower on a stool, which makes it hard to do much else (most showers aren't adapted for people who, when sitting, are barely three feet high). I never shower if I'm on my own in the flat because I have a regular habit of fainting, and because of the high risk of slipping over. I never even shut the bathroom door - partly so that people can get in if they need to, and partly because that way the steam can escape a bit to make me a little less dizzy. Often - and always in a bad patch - I need help to wash my hair because it's so hard to lift my arms up and use my hands without just jabbing myself in the eye with soapy fingers (proprioception fail). After I've tried to wash, I need help drying my hair, as I'm not strong enough to hold a hairdryer up. I have an electric toothbrush because I'm unable to use a regular one, but the vibrations leave my hand numb all night. And as for going to the loo - well, how many times have you had to do that with a paramedic standing by to lift you bodily off the seat when you're done, and to help you clean yourself up? Can you imagine the level of dignity that entails? How about having a parent help you with that? Probably most of you haven't had to deal with that since you were in the potty training phase. This may sound gross but here's one of the 'joys' of having a body which just doesn't work as it should: incontinence is A Thing. Needing to go to the loo a lot more than usual or a lot less than usual are also both Things. Needing to go so many times in the space of an hour that you can no longer use your hands to detach loo roll, fold it, and use it, is also A Thing.
Adult incontinence is so taboo that if you google 'potty training' you'll find hundreds of images of babies learning to go to the loo, but google 'toilet training for disabled adults' or even just 'for adults' and you get nothing but pictures of commodes, the odd close-up on a pair of hands, and ridiculous stuff like this. Clearly even The Internet is too embarrassed for this. What a good job The Internet does not have this in its daily life.
Once you've got over the embarrassment of other people helping you to wee and poo, having people help you get dressed and undressed is nothing. But what if you don't want people you work with to have to help you out of your clothes? What if you don't want to have to ask a stranger to help you remove a cardigan, because you can't do the buttons or remove the sleeves by yourself but you're boiling and blacking out and need to shock your body back into consciousness? What if you want to be polite and remove a hat or a hood when you go into a shop, but you can't do it because you can't get your arms to work - so instead you just don't go to the shop, but go home and roll on the floor until you've worked the hat off? What if you want to put on a pair of gloves because your poor circulation has turned them blue, but you can't figure out the co-ordination - so instead you nearly develop frostbite until you can go somewhere warm, at which point they swell enormously and become agonisingly painful, all because you couldn't put on a pair of gloves without help? What if you cannot for the life of you get the energy to put on your underwear, because bras are too fiddly, socks require too much hand strength, and knickers require the ability to lift your bum up a bit - so you have to wait for someone to come and help you put underwear on? What if you actually have no idea what to put on because you are so depressed that you don't even care about clothing, so you end up huddling in your pyjamas all day, vaguely aware that you're freezing cold, but physically and mentally unable to get up and put on a jumper? Well, the answer to all this is that you have someone to help you. I hope you have someone who can be around all the time, because otherwise you're not going to be able to go anywhere without being arrested. I hope you also happen to have a very close relationship with that person - because they are, quite literally, going to be seeing a lot of you...
The fun never stops.
Here's another one which is very personal to some people: your medication. Fortunately, John and I are close enough that I don't mind him knowing what I take and why. This means that it isn't a problem at all that he is in full charge of my medication. He knows what I take, how much, and when. There are a few things I can manage myself if they're in very small numbers (1 or 2 pills at a time) but otherwise I can't take pills out of packets. John sets up a week for me at a time on our favourite evening of the week - 'Pills Night *sigh* *groan*'. It takes quite a while, and I can't do it for myself - my hands aren't strong enough, and they shake a lot. He puts them into pill boxes so that I know what to take when. He then helps me take them out of the pill box every day and either shakes them into my hand or directly into my mouth, depending on how good my hands are that day. He then passes me some water, which he fetches from the kitchen because I can't carry a glass of water myself. It's pathetic, really, that I can't do any of this myself, but it is also just the way it is. I'm SO lucky that I have John here - but what about those people who don't have somebody that they can trust with private medical information, or with ensuring they get precisely the right dosages every day? After I've taken my pills in the evening I then need help to arrange myself in bed so that there are pillows and cushions propping me up (to discourage vomiting) and supporting my knees, hips and arms. I need help getting into my wrist and ankle splints. I need help getting into bed and being able to go to sleep - one of the things that humans are meant to do most naturally.
Typed 'I can't sleep gerd'. This is the non-baby photo.
John isn't just my pharmacist, he's often my interpreter. When I have a migraine, or go into sensory overload, or have seizures, or am drugged up, or in lots of pain, or very sick, or very tired, or very depressed, or manic and hallucinating, or can't hear properly, or black out, or my reflux has been so constant that my throat is completely raw, or when I am just in a state of deep confusion - he has to interpret the rest of the world to make me understand them, and vice versa. I'm lucky that, when it strikes, my inability to speak is transient. I'm lucky that John is good at guessing and knowing what I need. I'm not lucky that, very often, I can't find words, I don't know how to form them, I can't comprehend what's being said to me, I can't hear people clearly, and I end up scared, confused and angry because I haven't got a clue what's going on. I'm not lucky that I can barely use the phone to talk to anyone because I can't understand them without being able to see their face. I can use the phone to talk to John and my mum - that's it - and even then it's exhausting and hard work. People seem to think of the phone as something that everyone can use, and something they can use to contact me. People leave voicemails expecting me to reply, but it can take hours of replaying it to try and figure out what they've said. It drives me bonkers.
A couple of things can be worked around on my own. As I can't use a regular toothbrush, I'm lucky that I have a good electric one that my mum bought me. You can use other things around the house to help with things - I've developed an 'Angry Birds' technique of whacking something that I can reach (perhaps with a walking stick) in order to get at things I can't. That also works in supermarkets, but only with light products, otherwise you have gallons of fruit juice or tons of tins of beans crashing down on your head.
Chaos is nigh and the dog will be innocent.
So, those are some of the 'care' things. Mobility is more obvious. I can't walk far without falling over, because the nerves to my knees are rubbish and my knees just buckle. When I fall, I injure myself. Often, when I stand up, I faint, because my circulatory system is under enormous strain from having blood vessels with no structural integrity. Walking is not my strong point at all. That's why I don't do it much. It's probably the most visible of all the things that are 'wrong' with me, but I wonder how many people actually understand what it means? It's not just the simple getting about. It means being incredibly short. It means being the awkward one. It means not being able to move out of the way quickly. It means having to be hyper-aware of everyone else around you, because (usually) they sure as hell aren't aware of you. It means expecting people to bump into you. It means expecting other people to avoid your eye like the plague, but to stare at you as you go past (YES my front wheels light up in pretty colours and YES that's awesome and YES they're a lot more awesome than having EDS). It means having hands which are constantly tired and, in wet weather, dirty because everything that's on the floor transfers itself to your hands via your wheels. It means taking baby wipes with you everywhere to clean your hands with as if you were some modern Lady Macbeth. It means having to take the long route around pavements to find the drop kerb. It means almost falling into the road on any pavement with a camber (= c.99%). It means holding people up while you go over a small step or up a little slope, and desperately trying not to take them out as you come down a slope. It means suddenly stopping or falling out or sideways as your front wheels hit a rut. If you're in a power chair, there are extra problems - how long will the battery last? How sensitive can you be with steering and speed when your hands shake constantly? My power chair is great but it doesn't support my legs (unlike my normal day chair) so I have to get someone to tie my knees together with a belt because my legs aren't strong enough to hold themselves in position.
 The problem is further accentuated by the fact that although the UK is by no means the worst place to be disabled (and for that I am very, very grateful) there is still an enormous extent to which the social model of disability impacts upon quality of life for a disabled person. That is to say, our entire environment is broken because it cannot support me. I am not broken - I am not the problem. The lack of appropriate infrastructure is the problem, just as much as the lack of understanding displayed by so many people is part of the problem. 
For example, transport is NOT easy. Using my car is the easiest way to get around any distance, and I'm lucky that I have a Blue Badge and that the scheme in Cambridge for Blue Badge holders is very generous. However, actually using the car is tricky, and my procedure for getting into and out of my car is very lengthy. For example, to get in: open driver door. Wheel right into the V between the car and the door, as far as I can go, then put wheelchair brakes on. Using right arm, pull up on the frame of the car and try to twist at the same time so that I turn around, facing the chair and leaning back on the hinge of the door, so that the main chassis and the door can hold me upright. Remove wheels from wheelchair, place in back of car, then place chair in (always leaning on car). Sit down in driver seat. Pull one leg in. Pull next leg in. Seat belt on, readjust back support, get ready to go. Getting in on the passenger side is a lot harder, because I can't use my left arm (closest to the door - Brit build!) to get the seat belt or to shut the door - I have to lean over with my right arm. In my own car, I can just about reach. In my mum's car, it's harder, and I usually need her to help me get into the passenger seat then move my chair out of the way, pass me the seat belt, shut the car door, and put my chair away in the back.
The theory.
Public transport is a lot worse. The Tube in London is a nightmare as so little of it is accessible. Buses are better - a lot of them have ramps - but only if the bus drivers actually stop for you. Given the fact that I rarely go to London, the number of times bus drivers there have zoomed straight past me (despite having plenty of space on board, and despite - or because of - having seen me) is just crushing. It takes so little extra time to get my wheelchair on board, but adds so much time to my day when I'm sitting waiting for a bus which is a) the right number, b) empty enough and c) will stop. You think it's bad waiting for 15 minutes for the number 38 bus whilst dozens of others go by, only for three to arrive at once? Imagine how it feels for all of those three to ignore you - especially when you don't have the strength to propel yourself to where you need to be, and the Tube isn't an option. Mainline trains are rather better, but even then you have to deal with ignorant and selfish twits who would rather barge past you, smacking you in the face with their backpacks, than wait an extra 20 seconds for the platform attendant to put a ramp in so you can disembark. Just for once - ONCE - it would be nice not to be the last person off the train, or the plane, or the bus.
Whilst you're on your day out, how about when you find your way to the right building, only to discover a load of steps at the main entrance, and a discreet and hard-to-find sign saying, 'wheelchair access at the back'? You patiently push around an enormous building, following a scarce trail of signs to what looks distinctly like the messy, uncared for and forgotten part of the building, then make your way to where you could have been ten minutes ago had anyone considered that, just for once, it would be nice to be treated with the same level of respect as the able-bodied; that, just for once, it would be nice to be able to go in via the front entrance.
Do I sound angry? I might, and I don't care, because actually I am angry. Why must things be so difficult? Why do people not consider simple things? Here's another example: at my old college, a new building has recently been built. It opened earlier this year. Just to reiterate, it opened in 2015. This new building is the best disabled access the college has ever had in its 731-year history. It's brilliant. There are lifts, there are ramps, it's smooth and easy. But there's one thing wrong with it - the doors are UNBELIEVABLY heavy. Able-bodied people struggle with the doors. Now, imagine that you are on your feet, trying to open the door. You can brace your feet, lean your weight against the door, and hope to fall through it without losing too much dignity. If you're in a wheelchair, you can't brace - you're on wheels, and the most distinctive feature of wheels is that they turn. If you push against the door and the door is too heavy, you will be the thing that moves. Sure, you could put the brakes on, then try and open the door (assuming you have the body strength to do this with whatever strength you have in your arms, from a sitting position, when able-bodied people needed their entire body to open it). But once you've opened it, how do you keep it open and take your brakes off at the same time? And how do you keep it open as you try to make your way through the door? And what about when you want to leave the room, and now you've got to try and pull the door backwards? This time, you can't even put your brakes on, because you'll be in the way as soon as you move the door a bit. This is the problem: able-bodied people design a building and want to make it fancy and luxurious, which for some reason includes heavy doors. Nobody at any point thinks about whether someone in a wheelchair (or even just someone unsteady on their feet) is actually going to be able to open that door. It's a simple enough thing, but there just isn't the thought process in place - even though thinking like this should be automatic. It is SO frustrating!
When you cannot do these things by yourself, it means that, unless you have help, you simply don't do them. So, if I don't have someone doing it for me or helping me a lot, I can't cook, eat a meal, wash, sort my hair, get around, carry more than one bag of shopping, go to the loo, get dressed or undressed, travel somewhere, use the phone, talk to people when I'm feeling bad, take my pills, arrange myself in bed, 'just' fetch something from another room (or even from just out of reach), pour a glass of water, do the laundry... this is why I need help. This is why I need money to help me offset the fact that I can't work and other people have to spend lots of time looking after me with (at the moment) no form of renumeration at all. I need a better car that I can fit my chair into more easily, that I can push straight into without getting out until I need to drive, that is easier for me to control - but I can't apply for a car like this unless I am receiving benefits.
I've given up on style. Functional will do.
The thing that has really got me down lately is this: my life is hard. It's actually a lot harder than I make out to most people most of the time. This post is scratching the surface of how hard it gets, and it's only talked about the every day things I struggle with. It hasn't talked about the pain; the tiredness; the uncertainty; the depression; the constant sickness; the taste of blood and shooting pains when I sneeze; the burn I feel deep in my bones; the throat that burns constantly from stomach acid; the black outs and fainting; the heart that races and thumps when all you crave in the middle of the night is sleep and escape; the confused and scrambled mental state; the unworthiness and hatred; the anger and misery; the desperation; the dashed hopes; the rejection and dejection; the endless hospital appointments; the 'we don't know what to do', 'we can't fix this', 'we'll just make you as comfortable as possible', 'there's nothing left to try', 'let's run the test again', 'I'm sorry', 'we can't slow this down', 'this is a new problem for you', 'it's only going to get worse'.


For all of this, I get nothing. The IPC says I don't have an 'eligible' condition, which makes me feel as if my struggle with every minute of my life is a charade. The British government says that they - THEY! - 'have decided' that I am not in need of help. The people who love me now are dealing with me spending all my energy on functioning properly in public so that by the time I spend time with them alone all I can do is curl up and cry from frustration, desperation, pain and lack of hope. The act of crying this much makes me sick, it makes me faint, it gives me awful headaches and loss of vision. All I want to do is curl in a ball and not come out again, but I can't even lie down without my sodding stomach contents reappearing, so instead I try to hold it in for as long as I can, before ultimately giving up and deciding that since I'm going to die with this thing anyway I may as well choke on my own vomit and die on the floor now.

That is how I feel. It's not necessarily what I want to do, and - I promise - it doesn't mean I'm intending to kill myself. It just means that, because I have bipolar depression and a bloody difficult genetic disorder, I wouldn't mind if I did die. It would make things easier.

I can't do this fight anymore. I could do some of it before, with support, but now I can't. Everyone says I need to appeal, but I haven't got the energy to. Today, I gave all the forms to my mum, because she'll have to do it for me. I just can't. This setback has taken all the fight out of me. Part of it is BPD/bipolar talking, I know, but I just can't fight anymore. What I expect will happen is that the wonderful people I love in life will carry me through this (although it makes me so guilty to think of it) and they won't put me down until I feel a bit stronger. In the meantime, I will go on acting most of the time, around most people, but in the background always will be 'this would be so much easier if I weren't here.'
When you have that thought at the back of your mind it's difficult to care about the trivial parts of life.

Those of you who know me personally - if I seem vague in conversation, please don't worry. It's just that I'm struggling at the moment to keep my mind on what I'm doing, and my brain wanders off and my ears close and then I don't know where I am. I'm sorry. I care about you; I care about all of you. The problem is that I don't care about me.

Crumbling - Part 1

A while ago, I wrote a post in which I used extracts from 'Emm's Positivity Blog' to try and describe how I was feeling. At the time, I felt that I didn't have the energy to describe how I was feeling in my own words, and it was really useful to employ someone else's ideas to that end. Now, though, I find it hard to look through them, because I simply don't feel positive enough to believe most of them. For example, there's this one:
But I don't feel as if I've worked hard, and that's the problem - I can't work hard in the things that matter (which basically boils down to the PhD) and I don't deserve anything. Here's another:
But again, what if I can't get through it? What if I don't want to live through it? What if I don't deserve to get through it? And doesn't 'getting through something' imply that you emerge on the other side when whatever the 'something' is has passed? What if it never passes? This then makes me think, well, my health problems are something that I will always live with and that won't get better. When you know this, it can be really hard to stay positive. If mere survival is what is required, then this isn't bad advice:
But actually, if I just takes things a day at a time then what happens is that I never achieve anything and I just subsist from day to day. I know this, because it's what I feel I've been doing since the beginning of this year, when work suddenly became impossible. This is probably the most useful bit of advice I've found for me at the moment:
I know that this is true. I know that you can change your mind. But what do you do whilst you're trying to figure out one thing you wouldn't mind doing? The problem with a combination of physical illness and persistent depression is that you don't really *want* to do anything. You don't know what path you would like to take because really the most appealing thing, most of the time, is ceasing to exist. It's just a jolly good job that this elephant exists, otherwise I'm ruining a lot of evenings for people:
Unfortunately, not everything on the site is true. For example, this:
or this:
Sometimes, the blog hits the nail on the head for me. For example, there's this one, which (in light of wanting to abandon the PhD) I really want to believe:
and this one, which is just an old motto of mine:
And I think maybe I just need to change 'Things' in this to 'I'...
I don't have to stick with a decision that isn't working for me. It's just that it's really, really hard to find my way out of it. It's hard to justify giving up something that I worked so hard for, that I wanted so much, and that I was so excited at the prospect of achieving. What's even harder is accepting the reason for this, which is that I'm not physically able to achieve it. I can't do the travel that is required, nor can I put in the hours of work required. Because of the bipolar, I struggle to care about anything really, and a PhD is not something you can do half-heartedly. I feel that I'm not getting anywhere with life at the moment, and that before I know it I'll be in my thirties and instead of having had several years' experience in a good job I'll have flogged myself senseless by trying to achieve something which won't actually make any meaningful difference in the rest of my life. I won't be able to get an academic job without dedicating my whole life to academia right now, and I'm not able to do that. I need to make myself believe this:

Sunday, 18 October 2015

13.1 miles - 1:25:46

I've now had a bit of time to recover from the Perkins Great Eastern Run, aka that half marathon I was training for, and to allow some photos to surface! All in all it was a successful day out and although it was tough I enjoyed myself.
The route map.
It started early. I was up before 7am which is not something I would choose to do on a regular basis, and began to start the reptilian process of becoming warm enough to be able to face the day. I had put out all my clothes and equipment the day before so that I didn't have to engage brain early in the morning, and I simply sat and munched my way through half a peanut butter bagel as I wrestled my way into my clothes (with some help...damned compression kit and bad hands). My mum arrived in good time to pick me up and we transferred all my kit - including two chairs and the blue badge - into her car, then sleepily made our way out of town towards Peterborough, which is about a 45-minute drive from Cambridge. Rosie was very excited to be out and about, of course, but also seemed a bit yawny and had a nice little nap on the drive, whilst I finished the other half of my peanut butter bagel. It was difficult to eat but I was worried about running out of energy halfway round, so I forced it down with a sports drink to keep me as hydrated as possible, as I'd decided that the weather was not warm enough to warrant taking drinks in the chair.
Rosie enjoying a previous car trip.
On arrival, we quite easily found the car park set aside for wheelchair racers (nominally, at least - there were lots of able-bodied runners also parking there). Paying for the parking proved more problematic, since my phone refused to recognise the car park on the online system, which we needed to use to get the competitors' discount. In the end a very nice marshal appeared and gave us a free permit to park all day. Win! After that it was a case of getting to know the start and finish area so I knew where I'd have to be and when, and where to find useful things like the loos. At this point we were doing very well for time so I was feeling nice and relaxed. I bumped into Alice (from C&C) and then another female wheelie from Stockport found us, so we had a nice chat. The other racer was very friendly but did make me slightly nervous when she said that she'd heard there were nine wheelchairs entered. More competition! Eeek...
Fight fight fight!
After a while I decided it was time to go back and assemble my racing chair, so that I could be ready to get in once the fun run had been set off (they were going at 10.00 and the wheelchair race started at 10.25, ahead of the main race at 10.30). Having taped up the dodgy bit of frame on the right side of the chair the night before, I checked that the tyres were nicely inflated (praying that they were, as the track pump is quite tricky for me to use), popped the back wheels on, and set off for one last loo trip as the fun run set off. Luckily they had put out a disabled portaloo and they'd put it separate from the other loos, so we didn't have to fight off the able-bodied in our wheelchairs. Once I'd finished there I realised that the wheelchair racers were already making their way to the start area, and that some were even in their chairs already. It was only about 10.10 at this point, so although I made my way over I decided that there was no point in getting in yet. Really you want to delay it until the last possible moment, because although you need time to get comfy and sorted in the chair they're also not very comfortable, so there's no point adding an extra 15 minutes of discomfort to a half marathon!
Racers waiting at the start.
As we sensible C&C athletes were waiting to get in our chairs, officials came round to ask us for our anticipated times. Seemingly this was to allot us each a cyclist, but since the cyclists could all have managed any of our times I don't think it really mattered. It helped on the startline, as slower people had to give way to faster racers, but even then that only resulted in having one row with most of us in and one row of two. My cyclist was very friendly and warned me about a tricky left hand turn in town, before which he would blow his whistle loudly so I knew it was coming up. We decided that he'd stay in as long as seemed safe given the number of runners that would be bearing down on us. I was quite sure this would only be a few miles, given how quickly I'd been caught up with at the GEAR race in King's Lynn. He said that he would mostly cycle behind me and that he would be there to be an extra pair of eyes and ears. This is such a good idea - your visibility is really reduced in a racing chair as you spend so much time looking down, and looking around or behind you is difficult as you can't really push at the same time, and if you're not careful you could even flip the chair over.
Me with my cyclist.
Anyway, eventually the time came to clamber into Buster and to give Brabazon back to my mum for safekeeping. I got myself comfy and just thought about keeping my shoulders nice and loose, then we were called forwards to the start line. There were five women altogether in the wheelchair race, including me. I knew I could be faster than two of them but had no idea about the other two. I wanted to win, and I felt that I would far rather get ahead in the very early stages of the race and then try to maintain that lead than go slow early on and then have to make up distance on somebody else. I suppose I like to control these things from the front. However, I knew it was going to be a long old race and so I also had it prominently in my mind that I needed to pace myself. It's a strange thing going into a race and knowing nothing about the opposition (beyond what you've managed to achieve through some good old internet stalking). The hardest thing about this one was that there was no list of who was going to be in a wheelchair, so out of the thousands of runners entered it wasn't possible to research them all on the offchance that one might be competition! Anyway, as I approached the start line and awaited the countdown I had in my head: 'don't get left behind.'
Me in the green chair (3rd from left) not having the fastest getaway.
The gun went and we were off! To my right were my two C&C training partners, and to my left were the unknowns, including one chap who went off at a lightning pace. To my consternation, one of the 'unknown' women was matching him in the first few strokes (rowing term only? not sure) of the race. My starts are weak because I don't have much strength, so I was already being left behind. This gave me a kick up the backside in the opening moments of the race, and I immediately took it right up almost to a sprint pace. I kept sprinting, following the speedy chap, and looking for the best lines around the opening twisty-turny part of the race. There were a few slopes early on because of going over and under roads, and I was just doing my best to get ahead. However hard I pushed, though, I could still hear wheels just to the side and behind me, and I could sense another person there. I kept pushing, desperately trying to shake them off. I pushed as hard as I could but I couldn't shake off that presence. I was beginning to panic ever so slightly - what if this person was as fast as me all the way through, but saved enough energy through drafting behind me that they were able to storm past at the finish line?! Eventually (and this was around the 1 mile mark) I glanced back and realised, to my relief and amusement, that the person I'd been working so hard to escape was none other than my cyclist, and that there was nobody else in sight at all. Doh...
With this rather warm realisation, I decided it was time to rein it in a bit and settle into something that was more like a half marathon pace. I calmed down and slowed it down a bit. There was nobody visible behind me, and the chap in front was already out of sight. It was just me and my cyclist, and it remained this way for a long time. Unfortunately, the early sprint had been a bit of a shock to the system for my stomach and in fact most of my digestive tract, and just after 1 mile I managed to regurgitate most of my peanut butter bagel from earlier - despite taking my medication which did the square root of bugger all. Hoping that some of the calories at least would have found their way into my body, I pushed on regardless and just enjoyed the fact that my arms were still talking to me after their needless sprint. I managed to get the reflux under control a little bit but it did still keep happening throughout the race, meaning that I liberally sprinkled the streets of Peterborough with my stomach contents. Sorry, rest of the race...
The next bad thing that happened occurred at about 2km, where I popped a rivet in the frame of my chair on the left-hand side - i.e., exactly the same damage as had occurred on the right-hand side, leading to the taping up of the chair. I was furious with myself for not considering that it could easily happen to the other side too. It wouldn't have taken long to have taped up the chair on both sides, but I just didn't think of it. Fortunately at this point the damage didn't seem too severe, or rather it was severe but it wasn't causing a severe problem (yet). I just had to press on regardless...
So, things were going OK, then there was a big slope to take you to a bridge going over a busy dual carriageway. Had I been slightly less exhausted at the end of the slope up (on which I nearly ground to a halt) I would have appreciated the view I had at the top rather more, but as it happened I'd only just got to a flat bit when the lead car came past me, heralding the imminent arrival of the two lead runners. I was pleased that I'd held them off that far but I also knew that I could have held them off longer if it hadn't been for that wretched hill. As it happened though, what goes up most also come down, and I honestly don't think I've ever had as much fun in a wheelchair as I did racing back down that enormous hill! I sincerely wish I'd had a speedo on so that I could have clocked my speed, but chatting to people afterwards it turns out it would have been between 35 and 40 mph. Sweet... I shot past the lead car again, loving it. The wheels were spinning far too fast for me to attempt to push, so instead I just tucked my shoulders down and in and crouched down over the steering, trying to make myself as aerodynamic as possible whilst also enjoying the ride. There was a bit of a bend at the bottom and my speed was easily enough to flip the chair over sideways with the slightest tweak of steering, so sadly I did have to take the run off a bit (sorry, another rowing term) in order not to crash at high speed and probably wreck my chances of finishing (and therefore winning) the race. I had been worried that the long uphill slog had reduced my lead a lot, but after the exhilarating downhill I felt rejuvenated - it gave a much needed adrenaline boost!
What can sometimes happen when hills, corners and wheelchairs combine - Boston Marathon 1987. You can see a video of it here.
Because of the hill, I was able to hold the front runners off until about the 5 mile mark, and even after that there were far fewer runners coming past me for the remainder of the race than there had been at the GEAR 10k. I was feeling pretty good coming towards the halfway mark, which was on a long, straight and boring road in the northwest of the town. At the end of the road there was a big right hand turn - which I knew was the beginning of our move back towards the city and the finish line - where loads of people had turned up to cheer us on. Having them there all the way through really did help. Some people had just come out of their houses to sit in garden chairs and sip tea as we raced past; others came out in groups at churches and retirement homes. Being in a wheelchair, people are always especially encouraging towards me, and single me out for their cheers which is rather nice!
Around the halfway mark I became sadly aware that the numbness which had started early on in my left hand had gone all the way up the left arm, meaning that I was now really struggling to be effective and was just hoping that it would follow what the right arm was doing. Unfortunately, I was also having a lot of problems in my right wrist, which was reeeeeally painful. I wished I could have taken some of the feeling from the right arm and put it in the left one! One of my mantras is always that pain is fine and can be ignored (which gets you through everyday life when you have EDS!) so I just had to hope that the bigger problem - weakness - wouldn't start affecting my right arm too.
All was going OK until just after the 8 mile mark, when I went over a bump and the portion of frame that was no longer held in place by the naughty left-side rivet decided that it was time to start catching in the spokes all the time. I turned to my cyclist and asked if he had any tape, but he didn't, so the only option was to keep plugging on. Unfortunately, this problem began to slow me down an awful lot. There was effectively a brake being applied on that wheel, and I couldn't get the chair to run at all. It was so frustrating I nearly cried, because although 5 miles isn't too far it doesn't half feel far when your chair is broken and you want to win. I just had to hope and pray that I'd built up enough of a lead already. In the meantime, I continued, sounding like this:
The last bit of the course took us through the centre of town. I had it in my head that we were meant to go past the cathedral at some point, so I was beginning to feel anxious when this hadn't happened ('how much of the course can there be left?!'). Around this time, I suddenly heard a familiar voice from the crowd - my mum! - which spurred me on nicely. She leant down so I could see her and shouted encouragement, with Rosie looking very excited but also slightly peeved that I wasn't stopping to pet her. After that, it was just downhill to the last big bend before the final bit, where my cyclist left me to finish the race by myself (it was too narrow for it to be safe for him to accompany me). I pushed steadily along a tree-lined path, not really appreciating how close I was to the finish now. There had been mile and kilometre markers but I'd managed to miss quite a few of those. Finally there was one last little bend and then the final straight - uphill, on grass. Every wheelie's favourite! I couldn't control my arms anymore; my elbows were out like chicken wings and I just wanted to get to the top of the slope without rolling down it again first.
Having a bit of a nightmare.
I finally pushed my broken chair over the line and collapsed in a heap over my steering mechanism. Turns out that collapsing in a wheelchair is an excellent way to find yourself surrounded by medics. I was fine, just tired, but given that the only decision I'd had to make in the last hour and a half had been 'go until you stop' I was now completely incapable of making any more decisions or answering any of the multitude of questions with which I was faced after the finish line - 'Are you OK?', 'Would you like some water?', 'Do you have anyone here with you?', 'Where is your normal chair?', 'Can you get your way through there?', 'Would you like me to take your finisher's bag for you?', 'Was it OK?', and so on. In fact, the question which really stumped me was, 'What size t-shirt would you like?'
Everyone got a t-shirt for finishing, and although I was aware I had ordered a small I was suddenly struck by indecision when unsure if the sizes were unisex or whether perhaps I should have ordered a medium, and then I knew that I wanted a small but for some reason (fatigue) I just couldn't articulate that...oh dear!
...and now I'm feeling better!
I realised how much my brain was suffering when I looked straight at Alice's dad, standing near a bunch of day chairs, and didn't even register that this person I know rather well was familiar to me until I'd clocked that there were wheelchairs and maybe this might mean that somebody I knew would be around. Just after this, though, I was ushered into an 'Elite Athlete Area', where I met Super Speedy Matthew who had won the men's wheelchair race. We were both to wait there until it was time for the presentations. I had been the fastest female wheelchair athlete (and indeed had beaten all of the men apart from Super Speedy Matthew)! One of the lovely marshals attempted to ring my mum and get her to come to the right place, and I heard Rosie barking before I saw my mum with her, wandering off in the right direction. Fortunately, Super Speedy Matthew was in a day chair by now so he sped off to find her whilst I stayed stuck in the unmanoeuverable race chair. Then I got to have a nice hug with Rosie. :)
After that it was time for the presentations. I had to go up in Buster as my day chair was in the car, which looked good in the photos but made it interesting trying to make my way around on stage without falling off (at one point I had the front wheel and one of the back wheels hanging off the staging at the same time). Having been congratulated by a fairy, a mayor, and a large blue monster, it was time to prise myself from Buster and go and see the physios with Alice to get our shoulders seen to.
I was now rather hungry and decided it was time to replenish my stomach contents a bit, so my mum and I headed into town to find some sandwiches and to do some totally necessary shopping in a clothes shop that was having a closing down sale. You can never have too many new t-shirts in a day! At least by this point I'd worked out what size I was... After this we made our way back to Cambridge in good time for me to change into some sensible clothes and don some black shoes before heading out to Chapel. It felt a bit surreal sitting there in Chapel at the end of such an unusual day, but it was nice to round it all off with friends.
As ever after these kinds of events, I have people to thank. My mum took me there and looked after me, and Rosie was available for lucky hugs. Neil, Becky and Nigel worked with us at the club for weeks beforehand, helping to get us fit and able. Alice and her dad, Peter, and Becky and her boyfriend Mark, were all around on the day racing and helping. John wasn't able to be there but was in text communication! The race organisers ran an incredible event and really looked after all us wheelchair entrants.

I hit my target of going sub 1hr 30. I also achieved my unofficial target of winning. I had a good time and felt that I was pretty well-prepared (apart from not having taped up that other bit of frame). I didn't have an ideal race - my arms suffered a lot, I threw up a lot, and I had a fairly major chair incident, but I still did well anyway. It's good to know that things don't have to be perfect to go well, and it also means that in the future I know I have more speed there. Alongside the 'pain is nothing' mantra, which really helped me when my right wrist was in agony, I have two more that I use when I'm tired and struggling: 'Keep on trucking' and 'Prove it.' I kept on trucking and I proved what I could do.

Friday, 9 October 2015

Preparing for my first wheelchair half-marathon

On Sunday 11th October I will be heading to Peterborough (which is a bit north of Cambridge) to take part in the Perkins Great Eastern Run. This is a road half-marathon with a dedicated wheelchair event, and it will be the first time I've ever done a half-marathon in my wheelchair outside of training. In fact it will be only the second time I've done one at all, as I've only managed one in training and now I'm into tapering and rest, but the main thing is that I can go into it knowing that I can have done the distance before, which is more than can be said of the Great Ouse.
Becky and Alice at the half marathon last year.
My preparation for this has been going on on a small scale for a while now. Over the summer, I did several 10ks on the track (which I usually had to myself in the middle of the day) and along the busway, and I found that the first thing to start complaining was my back, which was often in agony. There was one time when I had to stop halfway round the track to get out and click it all back into place. I lay there on the track for a moment or two before thinking that if anyone looked out of the window and saw me lying flat out and motionless next to a wheelchair they'd probably call an ambulance, so I heaved myself up slowly and got back in to complete the distance. I'm not really too keen to be getting in and out of the chair on the race day as that will be a massive waste of time, so it was clear to me that I'd need to try and do some work on strengthening my back muscles. The ones that were hurting were the ones that are in a permanent spasm after my injury in 2003, so I knew this wasn't going to be an easy task, but I felt that a bit of work should make a bit of a difference.
This was just before I went on holiday, and I think that all the swimming I did while I was away actually made a huge difference. Because I wasn't using my legs, I wasn't hurting my back, but because of the position it was usually held in for an hour or so I was able to work on some of those core muscles. I also did quite a bit of practice using floats underneath my stomach which I worked to balance, which helped the core and back as well. All of this wasn't necessarily intended to alleviate the back ache, but I've noticed such an improvement that I can't help but think it must be related. I haven't done any swimming since I got back but it's something I should really get back into.
Another thing I've been doing to help strengthen those back muscles is to work with my new 'peanut' ball. This was a slightly gimmicky thing I saw in Tesco and then googled to see what the reviews were like. It turned out that everyone thought it was excellent, so I bought one and have been trying to use it regularly. The workout suggested for back/core is just at the right level and I can feel that things are improving a bit. I'm not sure if the really bad muscles are actually getting any better, but it feels as if the ones around them (above and to the sides) might be getting better at supporting them.
If I could get my left hand to stay on my head and my body to stay still I'd probably still not look as good as this.
In any case, back in the chair I've been able to go for much greater distances without as much discomfort. I did a 10 mile run along the busway a couple of weeks ago which felt brilliant, and I did a full 13.1 mile run last week. That one didn't feel so great - I was tired from the outset and my arms felt sluggish and heavy. I was tempted to do a shorter session but I had two thoughts in my head: firstly, that I wanted to do the distance at some point so I may as well get it over and done with; and secondly, that there is always a chance I won't be feeling great on the day of the race (however carefully I've rested) so I need to know that I can do it even if I'm not feeling completely up to it. As it turned out, once I got past about the 3 mile mark I began to feel better, and the second half felt easier anyway, probably because my route is straight out and straight back, so by that point I have to complete it if I want to get home!
I went out...then I re-started Endomondo and went home again.
With the group, we've had some useful sessions working on some longer runs, most of which have been timed rather than a set distance. Last week I was the only one and unfortunately I had to cut the session short as I had a really bad puncture in my left tyre, but this week there four of us (me, MJ, Becky G and Alice) and we had a really good session. I threw up a little bit at the end of it on the way home because I pushed really hard and the omeprazole I'd had just before wasn't quite enough! It didn't matter though, the level of sprint I'd gone for isn't anything I'll go for on Sunday except possibly right at the end when it doesn't matter anyway.
The tiny fragment of thorn (on the left) that was removed from my tyre and a penny for scale!
Now, I'm just trying to work out the right balance of activity (to keep myself moving) and rest. I've managed to rearrange a couple of things so that I don't have to get back in Buster until Sunday. I'm weighing up whether or not to go riding tonight - obviously I really want to, but I don't want to exhaust myself. This week has been pretty busy so far, with several really stressful appointments and also some hard physical work in the chair on Monday night and at the riding club trials on Tuesday (more about this another time). I've tried to ration myself to one 'interesting' thing a day (e.g. riding, going to choir), but unfortunately tomorrow (Saturday) will end up having three interesting things, so I'm just going to have to hope that they can be as restful as possible and that I can rest in between.
Other bits of preparation are making sure I know where I'm going on the day, how long it will take to get there, how long I have between my expected time of arrival and the race itself starting, where loos will be, what I'm going to wear, what I'm going to eat and drink, what pills I need with me and when I need to take them, and so on. My standard preferred breakfast in this kind of situation is a peanut butter bagel - lots of energy, easy to eat with nervous (= extra shaky!) hands, can be prepared the night before, can be eaten in the car, you don't have to eat it all at once, and so on. I'm not hugely fond of the sports gels and pricey protein bars you can buy anyway, but it's an added bonus that peanut butter bagels are pretty cheap!
Just enough space for one day's worth of medication, tape and splints.
Deciding on drinks is quite tricky. As a general rule, I don't drink when I'm exercising, because even when I take extra omeprazole it just makes me sick. The weather forecast at the moment looks as if it will be quite a bit cooler in Peterborough on Sunday than it was when I did my half marathon run in Cambridge last week (about 10°C down from 18°) which will help a lot with the 'no drinking' policy. I will drink a decent amount of sports drink first (sports drink rather than water so as to get the salts up) and hopefully that will keep me going without making me sick. It's all a bit experimental and all I know for sure is that I'll look forward to having something to glug at the finish!
So now all I need to do to feel ready is to have a good look through the course map, get some food shopping done, choose and lay out my kit, sort out all my pills, and try to cram in lots and lots of rest!