Looking Up

A and E for Spike and me.

Mon, 08 Mar 2010 09:29:54 +0000

After a long absence, and barely a passing blow on the last couple of visits, the weekend saw the dramatic return of my old mate Spike. This time he came equipped with knives, needles and cattleprods, and visited upon me a pain much worse than I have felt in several years. Oh yes, Saturday night was exciting. I even got to go to my local A and E by ambulance. What fun!

It all started at about 6pm, when the neuro-pain in my legs began to flare up more than usual. It had been above average all day, but this was something special. When the pain gets abnormally bad, I know that something's not right.

The body seems to find a way of letting one know. Some people with spinal cord injury will find that their spasms get worse when something's wrong, but as I don't get spasms, my neuropathic pain takes the role of messenger. With gusto.Then I began to shiver. Sure enough, I had a fever.

As I learned when I was in the hospital during my rehab, the fever is the first thing that must be tackled. So off came the clothes, down went the paracetamol, and I took to the sofa to wait for things to settle down enough for me to be able to work out what was wrong.

But things didn't settle down. Instead Spike arrived, all fanfare and razzle dazzle. He went to work with enthusiasm, and like a player returning after a long lay off, he seemed to have something to prove and made sure to let me know he was there. What started in my legs moved up to my lower back and kidneys, with the shivering getting worse. Soon the pain was so bad that I couldn't talk.

After Penny had a reassuring phone call with the good people on NHS Direct, An ambulance was dispatched, and I was taken to my local hospital. By this time things had settled down, and I was able to give them a full case history, impressing staff with my knowledge of my own 'health issues'.

After the labs came back, they had a diagnosis. It was one that many SCI people will be familiar with- UTI or bladder infection. Yes, after five years infection free, I have a UTI. I am lucky. Some people spend most of their time battling with UTI's.

I have always been pleased with my track record, to the point that I am deeply superstitious about which type of catheter I use. Here's a bit more of a tour of my bladder from a previous posting.

This next bit carries a warning. Those of you who have sensation below the waist and may be squeamish, look away now...

A couple of weeks ago, I had a little difficulty emptying my bladder. When it is very full, there can sometimes be a bit more resistance when inserting a catheter, and this is what it felt like, but no matter how much I tired, I couldn't get the thing into my bladder. After a few minutes, I gave up and withdrew the catheter, only to find that the last centimeter of the tip had folded back on itself, and was pink with blood.

When things like this happen, it's strange, but the first reaction is to feel a bit light headed with panic and brace oneself for the inevitable pain to follow. I know I can't feel it, but my subconscious is still engaged with my lower half in the same way that it was before my accident. This is important to me, it makes me feel, well, still connected.

Anyway, as with any damage to the urethra, it healed up very quickly, and the next time I took a leak three hours later the blood had gone. But obviously the damage had created the conditions for a UTI to take hold.

The next fortnight I had an upset stomach, lots of nausea, a lack of energy and a general feeling of things being not right. I put it down to a gastro bug, and would never have thought of a UTI, as my urine wasn't cloudy or discoloured or stinky. Yep, it's keeping an eye on these sort of things that makes spinal cord injury such fun.

So there's my cautionary tale. I have learned a lot this weekend.

I have learned that I am not immune to bladder infections.
I have learned that they are very unpleasant.
And I have learned that Spike is still a part of my life, but his visits are more likely to be timed to coincide with some other problem. He's only here to help, to let me know something's wrong. Still, he could try just a little itch or a tickle...

Moment of silent gratitude.

Fri, 05 Mar 2010 12:08:56 +0000

I have developed a rather bad habit. OK, lots of bad habits, but I'm only comfortable talking about one of them today, and anyway, what's so bad about keeping snails in your pockets?

I digress.

I was getting into my car the other day, and as has become a (bad) habit, I transferred into the seat without applying the brakes on my wheelchair. I do this, because:

a) I can.
b) Other people who have been in a wheelchair longer than me do and I'm ridiculously competitive.
c) I labour under the misguided notion that I am in some way working on my core muscles by not using the brakes.
d) I'm just not very bright.

Now, this technique has been quite reliable, until the day in question. I had transferred into the driver's seat, and pulled one leg in after me, but the other foot was still on the footplate of the wheelchair, and by turning my hips, I managed to 'use' my trailing foot to propel the chair down the pavement. Yep. Real dumb.

What followed was a simple and tacit communication between to human beings. A teenager, iPod attached and on her way to the local college, stopped the wheelchair without breaking step. She pushed the chair back to the idiot with the sheepish grin who was sat in his car, exchanged a smile and continued on her way. No fuss.

10 out of 10 for effort

Wed, 03 Mar 2010 10:46:23 +0000

I have, on occasion, entertained our daughter with cardboard tubes, funnels, drums, a glockenspiel and a whole load of tape. These items, when carefully arranged, have provided a 'marble run' down which cascades of glass balls have rumbled, bounced spiralled and plinked with much satisfaction.

However... Any sense of achievement felt by me has just been obliterated by the latest music video from those masters of the genre, Ok Go. Yes, the Honda ad from a few years ago was impressive, but this is... well... Here, see what I mean. Hats off to them.

Time of the signs

Mon, 22 Feb 2010 16:25:38 +0000

It's a source of amusement to me every time our beloved daughter sees a disabled sign and says, "Look Daddy, there's a picture of you." However, I'm not sure that the usual pictogram is the most flattering likeness I have seen...

For those who haven't seen it, the above version is my reflection on the rather passive appearance of a wheelchair user.

A trip to The British Museum this week revealed an altogether more pleasing image in use there:

It does look rather like our heroic wheelchair user is doing battle with a diminutive Sumo wrestler, while under fire from Robin Hood, but it's certainly much more dynamic.

Incidentally, our hero obviously defeats the sumo, but Robin and his merry men are clearly unfamiliar with the Disability Discrimination Act as is revealed by the sign next to the stairs. I'm not sure how 'safe' this particular area looks, if you ask me.

OK, it's a small thing, but it is nice to see an image that suggests at least some level of independence, rather than the traditional tea trolley in blue so widely used.

cha-cha-chair

Thu, 18 Feb 2010 11:56:46 +0000

So, episode 2 of Dancing On Wheels airs tonight, and I shall be tuning in. But not for the dancing, per se. I have mixed feelings about wheelchair dancing. Not other people dancing, you understand, but me dancing. Or not (I did cover the subject in one of my columns for The Times).

I must confess to having a bit of a problem with ballroom dancing altogether. Ballroom dancing is to dancing what Hangin' Tough by New Kids on The Block is to hip hop. I feel that dance works best as an emotional reaction to music, not buttock clenching displays of teeth, tits and glitter.

No, the reason I find dancing on wheels interesting is that it offers a great opportunity to watch how people react to wheelchairs and their users. Those people in the population who don't have regular contact with wheelchair users can end up weighed down with a whole heap of baggage -preconceptions, intimidation, or just mystification- and the programme offers the opportunity to unpack some of this stuff and get people a bit more used to wheelchairs.

You see, you can stare at the television. In fact, you're supposed to stare at the television. So maybe some people will watch and get a little more insight into what's involved in moving around the world in a wheelchair. As long as they don't expect us all to don the spandex and sequins...

pneu-man weeps on the sofa.

Tue, 09 Feb 2010 14:59:30 +0000

What's in a name? Well how about this one...

The latest addition to my affliction collection (will this effing winter ever end?) is something that has been sensitively called 'walking pneumonia'. Yes, walking pneumonia.

It is a mild form of pneumonia caused by the Mycoplasma pneumoniae organism that allows the afflicted to continue in their daily activities, albeit in a rather lack lustre condition.

This goes a long way towards explaining why I've been feeling so rubbish of late, and coupled with the tapering of my Amatryptyline (see blogs passim.) it has given me the full freedom to weep great big man-tears about manly things. In this case Matthew Modine losing his best buddy in Full Metal Jacket. I have decided to use the opportunity to catch up on one or two movies that I have been meaning to watch.

Oh, I know, it sounds like a bit of a doss. But I do have a hacking, unproductive cough, sore chest, head-ache and a certain amount of dizziness (maybe it's Kubrick's 'verite' camera shake). So while I offer defiance, the truth is, walking pneumonia is proving to be anything but a walk in the park (cue consumptive La Boheme-style coughing).

On the shoulders of giants

Wed, 03 Feb 2010 13:48:59 +0000

While talking of fatigue, and again in response to a posting on Andrew Farrow's fine SCI blog.

On the subject of shoulders, etc. I have been increasingly aware of two distinct schools of thought.

1. Don't strain your shoulders. They will give out and you will be further impaired. Avoid lifting, transfers, pushing up hills, sometimes all pushing is discouraged. I have even read recommendations that paras, even low level paras should use powerchairs to save on wear and tear.

2. The body is a machine. The best way to keep a machine working properly is to use it properly. Pushing a wheelchair does cause shoulder problems. But often these problems are made worse by the uneven development of the shoulder. Because pushing is narrow range of movement, the muscles in the shoulders become unbalanced. This often causes long term wheelchair users to develop rolled shoulders, almost a stooped look.

Professor Brian Andrews at Brunel who was instrumental in starting the FES rowing programme described how one of the many benefits of rowing comes from the action being pretty much opposite to the action of pushing a wheelchair. This can help the muscles in the shoulders to develop a more balanced shape, and also by strengthening the muscles it can help to prevent wear and tear on the joints themselves.

I tend to find from experience that the less I do, the less I am able to do. If I lead a sedentary life for a few days, I have less energy, more pain, slower bowel function and a lower mood.

Able-bodied people in their fifties are not encouraged to walk less in order to preserve their hips. While pushing and transferring are quite extreme movements, if the shoulders are kept strong and used reasonably cautiously I would expect them to last longer than if they are not used.

Ultimately, only time will tell.

Highs, lows and pants on your head...

Wed, 03 Feb 2010 13:18:49 +0000

I've spent the last week surrounded by technological innovation, blue-sky thinking and a new attitude to mobility. All will become clear in the near future, I can assure you.

What I have found is that there are days when just meeting someone for lunch and a couple of hours of chat can leave me so exhausted that I have to lie down. This isn't everyday, but nor is it predictable.

And yet on other days I can work all day and then play tennis until 10pm in the evening.

I suppose I can't really ignore the fact that I am weaning myself off amatryptyline at the moment. It is a slow process, with a drop of 5mg per week, but while I have been taking it for neuropain, it is an anti-depressant. This leaves me with a nagging twinge of anxiety that it has been slightly insulating me from the 'life's a pile of poo' vibe that can come with grey weather, neuropathic pain and impaired mobility...

OK, so now to the pants: It was something Rob Brydon said on a TV panel show, where he described getting undressed, finishing with a flick of the foot and catching his pants on his head. You'd want to hear a "Ta-Daa!"

Anyway, I found myself with a pang of grief, because I could almost feel the whole movement. As is often the case, it's not so much the stairs or problems with public transport that cause a feeling of sadness. Rather, it's those moments of frivolous spontaneous movement that are so fondly remembered. And so keenly missed.

Infodad

Tue, 19 Jan 2010 10:46:36 +0000

A small piece in today's Times in response to the government's plan to produce a guide to fatherhood for dads-to-be.

Do I think it's a good idea in principal? Yes. Will they be accused of 'nanny-state- meddling? Yes.

But here's the thing. It's usually the same people that level accusations of social meddling at government who then shout loudest that something should have been done when there are cases of abuse that have not been prevented by social services, or when pensioners die alone in the cold. Or complain about absent fathers and single mums destroying family values.

I think we have to accept that, in the absence of more traditional mechanisms of social care and education, the government can and should have a role to play. This is not to say that every proposed scheme is well thought out or even necessary.

Society is changing. There are more men in the role of primary carer for children. There always have been some men in that position and it would be good to see them recognised a bit more. The likelihood is that a government information scheme isn't the most enduring way of giving men information about fatherhood.

But it has also been demonstrated that when fathers are informed about breast-feeding (and they have finally stopped their juvenile giggling), their partners are twice as likely to still be breast-feeding their baby at six months.

Dad Info is a scheme that already exists with enthusiastic backing from the Royal College of Midwives. They produce a small information card for dads which are handed out by Midwives. As much as the card has good information on it, it is often just the fact that the midwife is giving the father to be something that makes it significant.

Right, that's enough for now. I'll get back to wheelchair adventures and cute animal pictures soon...

Cold comfort...

Wed, 13 Jan 2010 14:20:20 +0000

It is of little consolation to read that other wheelchair users find themselves pretty much housebound by the snow. Andrew Farrow, for example, talks of getting stuck between the house and the car, when he found himself wheel-spinning in the snow. I managed a few good wheel-spins on my semi-slick tyres yesterday.

Then I rolled through what appeared to be snow, but was actually a load of crushed mothballs (?). No really. As a result, my wheels, my gloves and even the cuffs on my jacket smell like the long-abandoned depths of a grandmother's cupboard. I keep glancing nervously over my shoulder, half-expecting to be savaged by a mink stole. I hope the smell doesn't have the same fur-coat associations for foxes, as one has taken up residence in our garden...

On the whole, I have remained relatively mobile, thanks largely to Penny clearing the path and the good people of Hackney Council coming and regularly shoveling snow off the pavement. That being said, I have still avoided venturing out except for the odd foray to the supermarket.

This feeling of house-boundedness has served to remind me just how much of my connection with the outside world was severed along with my spinal cord.

Before my accident (fell out of a tree while working as a tree surgeon for anyone new to this site), I worked outdoors every day. If a day went by without me going outside, a used to feel really odd. A sort of crawling the walls, claustrophobic odd.

Most of my leisure activities involved being outdoors- football, mountain biking, hiking, camping, Ultimate, or just hanging out in the park or on Hackney Marshes with friends.

Now, it is possible for me to go three days without leaving the house. This is extreme, of course. We don't usually have this much snow. If we did, I would probably work out a few strategies to make life a little easier. I still have quite big tyres on the wheelchair wheels that I 'wore' to Australia, and that certainly helps.

But with a platform lift between me and the street, and a balcony and flight of stairs between me and the back garden, I have lost the ability to just 'step outside'.

So I find my wishlist growing ever longer. As well as dreaming of an open plan home with level access throughout, I would like to be able to roll out into a garden, cup of coffee in hand, and stare at a few trees. Please.

Mind you, staring out of the window into the back garden revealed that I am not the only one who appears house-bound at the moment...

Challenging stuff...

Wed, 06 Jan 2010 13:08:00 +0000

...snow. Wheelchairs aren't really at their best in it. It's better than sand, being a little more sticky, so that it's possible to push through with decent off-road tyres. But it's cold. Very cold. And it makes the pushrims on the wheels very cold. And wet.

This makes finding the right gloves critical, as they have to be reasonably waterproof and still grippy when wet. And you still need to maintain a reasonable level of dexterity. I have tried many variations. Sailing gloves, which are my first choice normally are great for grip but freezing in the snow. Fleece gloves are great for keeping warm (although the seams inevitably leak) but they're lethal when wet. After running out of control on a relatively gentle slope and gliding elegantly into a large shrubbery, I decided the fleece gloves had to go.

I have even tried neoprene gloves which are certainly warm but much too grippy, making 'braking' sudden and very unpleasant and leaving the wheelchair user with whiplash at the bottom of the first hill. But thankfully I have rediscovered some gloves that the missus bought me for cycling in the winter a couple of years before my accident. They have pretty good grip, but not too much, and I can still feel my fingers after five minutes so it is those that will adorn my hands on the way the the Arsenal this evening, if the match isn't snowed off.

Sorry, that's much too much waffle about gloves. The truth is, for all my bravado, off-road tyres and warm gloves, I find the snow very difficult. Not because It's so hard to get around in. OK, that doesn't help much, but that is as nothing compared to the feeling of sadness at not really being able to take R up to the park, build a snowman, go zipping down hills with plastic bags for toboggans, and then carry her home when her feet are too cold to walk anymore.

So instead I glance out of the window facing an internal struggle between the child-like almost instinctive excitement, and the curmudgeonly practical gloom as the snow continues to fall.

I'll be honest, the worst thing about the comparison between the sand of the beach and the snow of the city is when they are separated by a matter of days and about 35 degrees celsius.

See what you think. Which of these two pictures looks more appealing, especially without any cocoa? By the way, it's not raining in the bottom pic, it's a sprinkler I went to sit under because I was overheating.

'10 in a daze.

Thu, 31 Dec 2009 15:34:05 +0000

As the other half of the globe slides into 2010, we have returned to the grey skies and near sub-zeros of Blighty. We touched down in Heathrow at about 5am this morning. No one in their right mind flies into Heathrow at 5am on the 31st, so we had the place pretty much to ourselves.

It was to ourselves, too. By way of a contrast to Sydney, Melbourne, Singapore, Kuala Lumpur, Hong Kong, Barcelona, Rotterdam,Isle of Man, even Gatwick, London City and anywhere else that I may have forgotten, we were given the opportunity to make our own way unassisted from the plane all the way through several miles of empty corridor with a wheelchair user, a sleeping four year old and four items of luggage. I was reminded if yet another reason why Heathrow is my least favourite airport.

Once I had demonstrated that I could transfer into my own chair and negotiate the step down from the plane onto the tunnel, all the ground staff mysteriously melted away. It frustrates me to feel that I need to consider making myself appear less 'able' in order to secure what comes easily from ground staff everywhere else in the world. I know Heathrow is supposedly the busiest airport in the world... not at 5 am on the 31st of December it bloody isn't.

Yes, it's the rich contrast of summer sunshine and winter gloom that makes returning to these shores such a delight. At least my absence worked wonders on the form of my beloved Arsenal. I now have a month's worth of Match of the Day to watch.

Another on the plus side, jetlag could result in me being the most wide awake I've been on New Year's eve in many a year. With this in mind, may I take this opportunity, through the haze of too much coffee and pain relief (13 hours in an airline seat is not exactly a joy), to wish everyone who's not there yet all the very best of everything for 2010.

And those of you who are already there, sitting around with your beer and flip-flops, the echoes of a firework spectacular still ringing in your ears? Stop smirking.

Christmas daze

Fri, 25 Dec 2009 00:25:19 +0000

Ho Ho Ho, m'dears.

Well, last night's Christmas eve celebrations took their toll. A mix of wine, tramadol and 'the moment' led to a bit of a muddle with my motion sensors. While rolling happily round the house to get to our bedroom which is downstairs (my in-laws' house is built on a hill), my head was turned by a beautiful moon peeking through the clouds.

Even though I knew it wasz unlikely to come to anything, I decided to try and capture the night sky with my camera.However, things quickly took a turn for the weird. Just as I was poised to take the shot, I was violently assaulted by a large bush. It was a chilling moment that caused a sweary outburst, before I was thrown to the ground by the aggressive shrubbery.

Once on my back, the change in perspective allowed me to re-evaluate the situation. It appears I was still on the slope when I stopped for the picture. Concentraing on my camera while surrounded by darkness, I failed to notice as I rolled backwards into the hedge.

So now, I must apologise for slurring the character of the Pittosporum, a peace loving shrub famous for it's even temper and refusal to be drawn into political debate.

Enough blathering, go and have a Great Christmas and raise a glass of something for me.

A presto!

Festive Greetings and idle ponderings

Thu, 24 Dec 2009 05:58:36 +0000

First, plenty of the best of the season to one and all. Here's to lots of excessive eating and drinking, the bare minimum of family spats and a complete ban on "I wish it could be Christmas every day."

It still feels wrong (no, not the Wizzard track. Well, that too, obviously) to be celebrating Christmas when it's 28c outside. But I'm doing my best. Once the stockings are full and the kids are in the full throws of a feeding frenzy under the tree, I'm sure I'll feel the gnarly hand of Christmas Present upon my jaded, cynical shoulders. Can one have cynical shoulders?

Idle ponderings. I apologise in advance, but a drop in barometric pressure has caused a flare-up on the pain front which is doing battle with a little too much Tramadol for incisive observation.

Idle ponderings I have on a daily basis, but the one that sits foremost in my mind came while we were driving up to the Illawarra Fly. Looking at the power lines that stretched up the mountain, I got to wondering why we don't incorporate cable cars into the power lines. Now, obviously, there would have to be a trampoline embarkation/dismount system to eliminate the risk of earthing the lines and frying everyone on the national grid, but I see this as just details...

On that hearty note, I wish you all a fabulous Christmas and a very happy 2010.

Blowing hot and cold

Fri, 18 Dec 2009 08:59:53 +0000

Another day another glorious beach surrounded by forest and wildlife so close you can touch it. Should you want to. Touching wildlife sounds like a euphemism for something filthy, I'm sure.

There you go, I'm even making up new Australian slang, and we've only been here a couple of weeks.

the beach in question was the beautifully named Depot Beach, next to Pebbly Beach and Pretty Beach. They really let imagination loose when they named the places around here. Mind you, the access road was called Agony Hill Road, the naming of which remains a mystery, thankfully.

We stayed in a cabin by the beach, surrounded by spotted gum trees right down to the beach. The beach is surrounded by rock shelves which allow intrepid wheelchair exploration with the aid of my slot on front wheel which allows me to cover rougher terrain while still being self-propelled. Not sand though, alas. The answer to that challenge still eludes me. Well, certainly one that I can travel with, that doesn't involve a two-stroke engine or cost thousands.

The rock shelf (remember?) is a strange mix of different stuff, some which was obviously spewed from a volcano and some which was carried along until the whole molten mess hit the ocean. The effect is something like a geological cake. Yummy.

next we have a couple of days catching up with friends in Melbourne before Christmas replete with sunshine and heat. Funny to think that back home we have intrepid visitors shivering in our flat, no doubt watching the snow stick to the windows, blurring the view of ragged, crippled children hobbling along cobbled streets while top-hatted toffs beat them with canes from atop handsome cabs. Makes yer wanna weep in shame, guv.

Alright, I may be rather over-doing it with the contrasts and all. But the sun does rather make a snowy winter Christmas seem even more Dickensian. And as snow isn't much easier than sand when you're in a wheelchair, I think I'll enjoy the shorts and sandals option while I can.

Pip pip!