Live your potential

Yes, I am fat. But cheap.

I'm vain. I used to be fit, thin, fast. I'm none of these things now. I find my fat tetra tummy hardest to cope with. That said, it's more a state of mind: I used to have a 32 inch waist and now it's 36 when I lie flat. But it has implications: too fat means new wheelchair. This was the message I got when I had my last assessment at the Spinal Unit.

I was bought a Quickie Ti, a super-lightweight titanium chair, by a rich Canadian friend, rich (and generous) enough to afford the £4,000 price tag, including extras. The Unit's response when I mentioned that I couldn't possibly afford a new wheelchair was: "well, it's your skin that you're putting at risk". So for the last few weeks, I've been wondering what I could do. Could I recycle parts of my existing chair, such as the wheels, the footplate, the brakes? How could I find that sort of money? I wasn't sure I could ask my friend for another wheelchair 18 months after he'd purchased the original.

Today I managed to speak to the people who sold me my Quickie. "No, you can't recycle much of your existing one. It would be cheaper to buy a whole new chair. Quickie's have gone up in price, but a cheaper titanium version would cost around £3,000". Great.

We talk more about why I need a new chair. "Oh, you're only eleven and a half-stone? And you need a new chair because your legs are rubbing against the wheels sometimes? Well that's OK then. Your chair is fully adjustable. You can change the wheel settings. Or if that doesn't work, you can buy a new axle bar - £100 - which will make it wider". Relief. And a reminder that I really ought to know more about my wheelchair. It could save me a lot of worry. As well as cash.

Rubbish

Spinal cord injury means your bladder and bowels don't work properly. You therefore generate a lot of extra rubbish. Unfortunately for me and for the rubbish collectors, the council doesn't consider this clinical waste so you can't easily get an additional bin.

After some discussion, I've been granted orange waste bags, of which I am allowed to use three a fortnight. At the same time, I have been offered "assisted waste collection". I have to apply for this, completing a simple form. However, this form includes a demand that I respond within ten working days of the date of the letter, "otherwise the Council will assume you no longer need the service". I'm angered by this and send the following response:

"I am surprised by your demand that you receive a response within ten working days from the date of the letter. I note that the letter was dated 26^th March and yet not sent until 27^th March. Given the uncertainty of Royal Mail delivery times, there was no guarantee I would receive it the next day. Even assuming I did, I then this leaves me only eight working days to reply. If I was having difficulties, I imagine I could contact you to say that this timescale would be hard to meet. However, given that a request for Assisted Waste Collection is likely to come from the more vulnerable members of the community, I find the tone of your letter unnecessarily harsh. Yes, of course you need to encourage people to respond within timescales. But could you not offer a longer timescale or suggest they contact you if they are unable to meet the deadline?

"Given your timescale demands, I think it reasonable to assume that the Council will adhere to the same. I therefore expect that I will receive confirmation that my application has been considered and that I will receive assistance with my waste collection within ten working days. If I do not, I assume that you are happy for me to make a formal complaint."

I get a phone call just inside the ten working day limit. Profuse apologies and "we've changed the letter to reflect your concerns". Good, they should. Hopefully there will now be a few less anxious people wishing for assisted waste collection.

I tweet therefore I am

I've recently become a Twitterer (in the sense of using Twitter, not the standard definition of "1. To utter a succession of light chirping or tremulous sounds; chirrup. 2. a. To speak rapidly and in a tremulous manner: twittering over office gossip. b. To giggle nervously; titter. 3. To tremble with nervous agitation or excitement.).

I joined because I wanted to make sure no one else got my name: I can be plain old "andrewfarrow", as I am on Skype (andrew.farrow). No need to be andrewfarrow2345. I'd been reading a lot about Twitter in the papers, and I was curious about it as a communication tool. I do tend to jump on to bandwagons (Facebook, Skype). Not as they start rolling, but before they're careening along. I usually send out a tweet a day, usually on some deep thought to fit my 140 character limit.

Today I learnt from a BBC Ouch tweet that twittering might help, amongst others, people who have a high spinal cord injury: "The Brain-Twitter project...is based on the idea that paralysed people can send messages on Twitter by thinking about it, using electrical impulses. Read about it here. It's intriguing.

[Postscript. Does Johnathon Ross - @wossy - read my blog? He's just sent out a tweet thus: "I twit therefore I twam"]

Help

I've been very thrown by last week's autonomic dsyreflexia episode. I've been completely exhausted, far more so than normal. I've been feeling emotional and wobbly. This is not my usual style. It's made me think a lot about how I (don't) treat myself. I don't accept that I'm disabled. God, I hate even writing the word. But I am. And I need to treat myself more gently. I need to allow myself down time every now and then. I need to listen to my body.

 I've also been thinking about support. On Friday, the friend I was with in the cinema offered to take me to hospital. He asked if I needed help getting home. I refused both. Why? Going to hospital wasn't necessary. But getting help to go home was. I was a fool to have driven back alone. If my blood pressure had gone up again, my vision might have failed and I could have crashed. Yes, I was concerned about what we would have done about cars: if he'd driven me, how would he have got back to his house? But we could have worked that one out.
 
I'm great at asking for help most of the time. I ask complete strangers to grab my chair out of the boot of the car. I ask people to help me over high kerbs. When people offer to help push me up steep hills, I usually accept. So why did I refuse help that Friday, when I really needed it? Was it because I was pretending I'm not disabled? Because I thought it would be quicker to drive home myself? Because I didn't realise how serious the dsyreflexia was? Because I wanted to remain in control and couldn't accept that I was actually not in control at all?
 
I don't know the answer to any of these questions. I need to think more. The first step on the path to change is to become more aware. But I need to get some understanding quickly. When there's another emergency, I need to be able to accept help rather than automatically refusing it. As smiley Miley says, it's going to be an uphill battle, but I'm going to rise to the challenge. I'm going to make some changes.

Vote for me, me, me!

A while ago, I was challenged by a friend who asked "What are you doing, Andrew, to get involved in the Health sector/Spinal movement?". He'd recently been elected to the board of the Bristol Royal Infirmary. As fate would have it, I'd just received a circular from Salisbury District Hospital asking for people to stand as governors. So, spurred on by his challenge, I attended an introductory evening at the hospital about what being a governor entailed. There are 27 of them, they meet four times a year - more if you join a working group - and "Governors provide an essential link between the Trust and its members, feeding back information from the membership that can be used to help shape and plan services for the benefit of local people. They also have a number of statutory duties, including the appointment of Non Executive Directors and considering the Trust’s Annual Plan."

It sounded fascinating, and an opportunity to give back something to a place that had given and continues to give me so much. I could stand as representative of Kennet, one of Salisbury's seven public constituencies. Or, as a spinal patient, I could stand as a "patient/carer Governor who represents the interests of patients from the Trust’s specialist services" (plastic surgery, burns, cleft lip and palate, spinal injuries). I decided to stand as a patient/carer Governor.

The process, managed by the Electoral Reform Society (ERS), is surprisingly simple. I needed no proposers. I just had to complete a basic form and include a one hundred word statement. Mine reads: "I am 43, married, have two children and live in Devizes. In 2006 I had an accident that has left me in a wheelchair. I spent 14 months in the Spinal Unit at Salisbury Hospital. I used to run my own business but am now retraining to become a primary school teacher. I know what it’s like to be a patient. As a governor, I would ensure that patients’ needs and concerns are heard. I would bring my management and fundraising skills. I would ensure that staff, particularly nurses, get wider recognition. Finally, I would improve communications to members."

Nominations are now closed. Voting packs were sent to members yesterday and results will be provided to the hospital by the ERS on 15th May. There are two people standing against me.

So, if you're a member of the Trust ("members are drawn from three groups - Public, Patients and Staff. Public members are the local people that come from our general emergency catchment area and live within one of six areas known as constituencies. Patient/Carer members live outside the general emergency catchment area and have been treated in the Trust's specialist services since 1 January 2003". For more information, and to register as a member, visit the hospital's site) - if you're a member, vote for me me me! And if you're not, keep your fingers crossed...

Postscript: I've just checked with the Trust about voting. You can only vote if you were registered as a member before the voting papers went out. So if you were stirred by my rousing statement and moved to vote for me...unless you're already a member, sorry, you can't. You can always send me messages of support though!

Near death experiences

We spinies, those with spinal cord injury, have a number of wonderful medical conditions. Of these, one of the most dangerous is autonomic dsyreflexia. It generally affects people with an injury above T5/6 (I'm T2). Dsyreflexia occurs when there's something wrong below the level of your injury (blocked catheter, broken leg, ingrowing toe-nail). With diminished or zero sensation, you can't tell there's a problem. Because the brain can't get any messages through the spinal cord, the body uses what seems like a stone-age response to let you know there's something wrong: it puts your blood pressure up. And up. And up. You can take a drug, nifedipine, that will briefly reduce the blood pressure and buy you a little time. Hopefully, you can then find the source of the problem and resolve it so your blood pressure drops. If you can't, you suffer a stroke. You die. It's that dangerous.

They lecture you endlessly about dsyreflexia in the Spinal Unit. I experienced it mildly in hospital - one of the symptoms is a splitting headache - but it was quickly sorted. I've therefore never really paid that much attention. Big mistake. Huge.

On Friday I was on a man-date in Bath, watching I Love You Man, that new genre of film - a bromance. I started to get a splitting headache but was desperate to get to the end of the movie (not that it's that special. I just like endings and closure). As soon as it finished, I rushed to the loo and sorted out my bladder. Still a pounding headache. Then I threw up.

If you have a higher level spinal cord injury, you should carry nifedipine with you (and a card that explains the symptoms and treatment of dsyreflexia) at all times. I lost the card ages ago. And the drug itself is very tedious to carry about. It comes in a soft shell that you bite on, spit out and then swallow the liquid drug. But the pills always fall out of their packaging and the shell becomes sticky when wet. Not ideal for keeping in a bag under your wheelchair.

By now, I'm panicking. I'm obviously going dysreflexic and emptying my bladder hasn't resolved the problem. There must be something else, and I don't know what it is. I don't want to die. I've been through so much, survived so much. I really don't want to die now. I scrabble about for the nifedipine to buy me a bit of time. I can't find any. I empty out everything from the bag under my chair. Lots of painkillers. Lots of anti-spasm drugs. Penknife. Pens. Cheque book. Screwdriver. Nail clippers. No nifedipine. Headache getting worse. Finally, scratching about in the dusty corners, I find a single pill. Bite, spit, swallow. I now have about half an hour to find out what's wrong before my blood pressure goes up again.

I call the Salisbury Spinal Unit. They tell me to drive home, check my bowels, lie down and check over my body to see if I've broken anything. I drive fast. Half an hour later I'm in bed, bowels sorted, no obvious bones sticking out, feeling safer. Spinal Unit call to say that if I'm still feeling ill and am worried, I should call 999. I take a sleeping pill and am knocked out for thirteen hours.

The whole episode was quite terrifying. It's a shocking reminder that living with spinal cord injury can still be dangerous. Most of the time, things are pretty good. I feel lucky that things are not worse. This brought me up cold.

Still, I learnt a couple of things. One, get a case for the nifedipine so that it's always there and easy to find. Get another copy of the warning card. And don't drive home alone. If my blood pressure had started to go up again, I probably would have passed out at the wheel. Next time, if I'm with someone I need to say "please drive me home. And if I pass out, take me to emergency".

Hit and (not) running. Oh the irony!

I'm disturbed to read in Disability Now about Boris Johnson's plans to speed up car journeys by reducing the available crossing time at traffic lights. When I lived in London, the "government guidance for walking at a speed of 1.2 metres a second" was manageable. I could walk. But now that I'm a country mouse and also in a wheelchair, I'm not so sure it is manageable any more. In fact, I know it's not. Because my level of injury is so high (just below my armpits), my balance is appalling: I have no core muscles to keep me steadily upright. Hitting even the smallest hole with my front wheels at a slow speed can throw me out of my wheelchair (as it did the last time I was in London, crossing a road). I therefore wheel very slowly and carefully. But if I now have only six seconds, I'm going to need to go faster. Of course, during the day I'm a big target and fairly easy to spot. But what about at night? Added to that the additional pressure of a countdown: "Digital countdown displays could also be introduced at crossings which would show pedestrians the amount of time left for them to cross".

I'm glad to see that a Transport for London spokesman has been looking at how realistic this is. He said that "150 crossings had been looked at so far and that six seconds had been removed from one junction but the amount of time available to cross still fell within government guidelines". One out of 150? Has he tried crossing in a wheelchair? Or blindfolded? Working on the assumption that it's better to catch these things early, I'm going to be writing to my MP. Before I become roadkill.

Fashion victim aka style icon

The best thing about keeping a blog is the feedback I get. Not so much the comments, because people seem unwilling to speak up in public. I'm not sure why. No, most feedback is by email and it's amazing to hear of how your writing has touched someone, brought them comfort.

It's also warming to be reminded of the forgotten past by friends who read the blog. My memory was refreshed by this from Sue: "You've always been a style icon. I remember discussions in CUCC (Cambridge University Caving Club) in the 80s about "Andy Farrow trousers" - the louder the better. I also remember Patrick going to a fancy dress party as you in a jumper complete with a ring of coloured paper clips and a copy of the Guardian under his arm! So maybe 'women's lime green coat' isn't so far off the mark!"

Thanks for reminding me Sue! This brings back a recollection of me rowing at stroke for the college 1st boat, knitting and wearing a "Dig deep for the miners" badge. It's fair to say I was a little different from the rest of the crew.

Too many channels

There's a great scene in the trailer of He's Just Not That Into You. (I've not seen the movie yet). One of the characters is talking about how hard it is to get in touch with a man nowadays when there are so many different portals and technologies.

I know how she feels. I blog. I twitter (very occasionally. I send one tweet a day). I have two email addresses. I use Skype and MSN. I'm on Facebook and Orkut (the latter rarely - it's a Google based community). I play two very addictive games on my iPhone, iMob and iVampire, that involve mobs and clans respectively (don't ask. It's fun though). So that's ten different ways to get in touch with me. Ten different places where I can see what friends have been up to. Ten different portals. As the Drew Barrymore character in He's Just Not That Into You says, it's exhausting.

Yes, I am (even more) fab

Whilst I was checking the stats on my site yesterday to see how people had found me, not only did I come across an amazing short story but I also found a great piece written about me on the Tanni and Anni site ("the future of adaptive fashion"). It starts "It’s hard not to be distracted all the by Twitters / Facebooks and blogs these days, but here at Rackety’s HQ we were delighted to read this heartwarming blog from Andrew Farrow". I was charmed. And flattered.

I'd written about them here and here, talking of their wondrous clothes. And now they've written about me. It's becoming fabulously self-referential. What will happen next? They'll invite me to be a fashion model? Will I get them to display their clothes at my next event? I wait with bated breath.

(And since I'm talking about strange searches, someone arrived at my blog after searching for "women's lime green coat". Most odd).