The 1000 Mile Analysis

WP_20150206_13_45_34_ProIt’s been two years since I fitted an odometer to my Sunrise Quickie Xenon and near on three years since I took delivery.  In that time its seen the hold of planes, been on many trains, been used when photographing cranes (but only to sit in)… and of course, met many a bus.

As I reached a major mile marker this past week, I had a bit of a think about how far the chair has gone and what it has gone through, including:

  • Carrying the children on my knee
  • Countless meetings and walking to them
  • Humidity in butterfly houses
  • Mud in country parks

If it were a car, it’d be having its 3 year service by now – as it is, this chair has had two sets of rear tyres, three sets of front soft-rolls, the left brake broke and had to be replaced and at new year the seat support on the front left broke off, which is now being replaced.

Its a good chair and has worn well – given the choice in the future, I’d probably get another in a flash.  It fits in well with my family life and has taken the brunt of everything it has had thrown at it. 

Would I have another? Certainly.  My only recommendation – get yourself a speedometer and odometer and measure how far and how fast you go – it does make for some interesting numbers.

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The Cylindrical Psychosis

I had to psych myself up.  Take a deep breath. Work out if it was the most economical route or the quickest route or whatever but would it get me there, problem free.

Its not going by foot path nor bus – its tube – an arch-nemesis of the wheelchair user.  I’m going to use 3 different lines, change at two stations – to get to my train home.

Its not an impossible task – but its one that takes a little bit of judgement, a little bit of thought and a chunk of confidence.  And attitude – one of those that says “f*** you to people in your way.

I wasn’t alone either – I had my manager with me, so I had to do this properly or apologise in advance to him for the monster I know I can turn into.

Waterloo to Liverpool Street, peak Friday night rush hour.  Waterloo – Green Park – Kings Cross – Liverpool Street.  Flat access. I knew I could do it – I just had to go for it.

I kicked off on the Jubilee Line westbound for Stanmore.  Two stops up to Green Park on a mildly busy train.  It was warm but bearable.  Step free, totally.  Off at Green Park and up in the lift, my aim next was the Victoria Line.  Wheeling (keeping right) up the uphill stretch in the interchange tunnel to turn left to exit and the lifts – downhill.  This is at first gentle – for 5 metres – then steep for 5, then long and reasonable for another 150 metres.  I did the only thing any lunatic would do – I said excuse me to clear a way and ran humming the brakes down hill, hitting an easy 8MPH as my chair was allowed to succumb to the lure of Law of Gravity.  The Xenon rolls so much more quieter, smoother, neater than the old Quickie Q2 HP, less of a thump as I hit the gap between the tiles on the floor.

Slam the brakes on, turn left, roll through to the lifts – my manager had thankfully kept up.  On to the Victoria Line – the first train crammed and jammed and the second train little better.  But I got the second train – able to get into the wheelchair space and park too, a miracle in itself, as most people are surprised to find a wheelchair user outside of the Jubilee Line, let alone on the tube.

Jump off (not literally – flat access again) at Kings Cross and switch to the Met.  Using the long tunnels, people keep walking 6 abreast and slowly, causing me to get fed up – something I have to live with until a gap opens and I can get moving again, my chair taking little effort to get to speed to enable me to move swiftly to the lift, taking it to the exit and out to go to the Circle, Northern and Met.  Masses of people, most of whom don’t know where they are going.  Through the ticket halls and into the CNM, pushing now to get to the platforms, holding a position and letting others make their mistakes of walking into my path – that pre-meditated aim for the lift which takes me the lines where a Met train for Aldgate is waiting.

I rolled on board.  These trains are new. Flat access. Air conditioning. Success.  I took it to Liverpool Street – success bound for me as I am one train away from being on my train home.  And it all looked so easily done, written down.

But the pre-meditation, planning, thought, mental cajoling to get there was totally invisible.  But it was there.  Took me all of half a second to know I would go for it.  It was a round about way to get from Waterloo to Liverpool Street – but I did it. 

One small roll for me – one giant wheelie for my kind.

I got to Liverpool Street, my journey spend admiring how I could see the length of the train start to finish and rolled off, out and up the short slope to head for the exit gates – my train 10 minutes away and leaving me enough time to get something to eat and book my assistance onwards.

Proof too, that I have a new choice open to me instead of a bus or taxi.  Just like many others.

The Mercutio Analysis

Anguish and pain filled me yesterday whilst I was sat on the sofa, my faithful steed sat on its haunches (yes, it has haunches) beside me waiting to jump into action, when I discovered a fairly deep scratch of painful proportions.

Bearing in mind that this wheelchair is still very new (especially for me) and something that I want to really look after, this scratch on the Xenon hit me like a knife to the chest. 

After blaming all and sundry, I look a close look only to see that this deep mark holds all the hallmarks of my cursed enemy – doors. Its height is perfect to match up to a kick plate.  The cut could only have been achieved with metal on metal contact, like the stuff they make in Port Tybalt Talbot.

Having discussed this issue with fellow chair users online, I think I am off to Halfords for a touch up paint kit for a car… because Sunrise don’t do them for the wheelchair.  I can’t help but feel a trick was missed there.  Although I’ll get it out, I’ll always know it was there though.  Battle scars and all.

Living on an inert gas phenomenon

I’ve been living with my new Sunrise Xenon for about a week now, having taken delivery on Tuesday.  It is a complete change from my last chair, a Sunrise Q2, which had a 100 degree footrest angle and weighed in at about 10kg.  By contrast, I’m now weighing in at little under 9kg and with a 92 degree footrest.

xenon-logoI’ll start with some basics about the Xenon.  It’s green – a nice, dark green – with 24 inch rims on the back and soft-roll 4 inch on the front.  The seat is 40cm by 40 cm and on a tilt back, nesting me into the angle adjustable back.  I’ve also got an auto folding foot plate.

There is a definite difference in this chair to other chairs – its very well balanced for such a short chair.

frogleglogoI have got some major differences to the previous chair that make a huge difference though.

The first is the Frog Leg suspension, which, coupled to the 4 inch soft roll wheels, mean that I am not feeling every single lump and bump any more.  I like them a lot and they were worth the investment.

Secondly, I have got a lot of pockets – 3 to be exact but considering most chairs have no way to store anything around them, this is a major plus.  One of the pockets is locked under the cushion which offers a secure storage point for things like my wallet or a Double Decker.

xenon-pocketI am no longer seated on vinyl but instead on a Visco memory foam cushion, which is offering my derriere previously unknown levels of comfort.   Actually, in truth, its nice for my rear end to not be sweltering away and it is complimented by the vented upholstery on the back as well.  On the end of the upholstery are the other two pockets.

xenon-brakeThere are other useful bits too – the fold down handles prevent someone from helping me without first asking if I need or want help.  The wheels have a simple change camber, meaning I can switch from 4 degree to 0 degree with the useful tools, supplied.  The brakes sit neatly beneath the under frame to prevent interfering with a side transfer.

As a chair goes, this one is light enough for me to push myself uphill.  That, for someone with a muscle disease, takes real effort.  It is smooth and will roll with minimal effort.  I’ve already taken it on a few trains with some success – its been welcomed by taxi drivers so far too.  It looks smart, I feel comfortable and I trust it not to do something silly like tip back randomly.

The downside is that I’m afraid to get it mucky or the hand rims scratched.

Formulation of a new methodology implementation

To say I am a little scared, apprehensive and worried is fair, on this situation. Many times previous in this blog, I’ve compared a new wheelchair to a new pair of legs, this continued choice in mobility being preferred over the options open or should I say singular option open to me – that being electrical propulsion.

EPIOC. Electrically Powered Indoor/Outdoor Chair. Although one wonders how they can be limited to indoors, the outdoor limited chairs so big I couldn’t imagine fitting them in my house. Digressions, procrastinating actually here. Mostly because I’m still having the odd doubt.

Someone said on twitter recently during a #hashtag conversation called #whilstdisabled that independence means sometimes asking for help, which is something I’ve always been reluctant to do. One thing that did bothering me is although this chair will improve my own general mobility, it will mean relearning all my tricks. Tricks like kerb jumping, train dismount, climbing steps. Its like going from freerunning to crawling again. This old dog will be learning old tricks again…

Plus side will be a severe amount of comfort and mobility around tight spaces. I’m looking forward to the FrogLegg Suspension on the front. Fold down handles. Breathing, comfortable fabric. The pros far outweigh the cons.

I suspect its the Old Dog in me, trying to stop change. I have a milestone coming up too which I’m also apprehensive about but I can’t stop that one. So the Old Dog can stay in his basket.

Because change is happening. Tomorrow at 09:30.

The Anticipation of an International Symposium for Wheeled Seating Solutions

I would be telling fibs if I said that by now, I’m getting excited.  If you are a loyal reader, you both will remember that I tried out a number of wheelchairs over the past 6 months and came to an agonising cliff hanger.  This cliff hanger took place in my own chair though, so no one was the wiser…

But, on International Wheelchair Day, a day when Wheelchairs become International Business Wheelchairs and International Spy Wheelchairs and International Rock Star Wheelchairs, I am going to share with you my choice, but only after I’ve waffled a bit. 

I believe that Wheelchairs play more than just the part of being a choice of mobility to replace or supplement where walking is not an option.  My wheelchair has always been a part of who I am. Touch the handle and I feel it.  I sense all going on around my chair. 

My wheelchair has to be my word day suit, my evening rest attire, my play time overalls, my sick time comfort.  It is the item that I am seen in most – it must represent all that I am and show me to be the person I chose to be in the first glance and the final good bye.

I got married in my wheelchair, I carried my first born, my second born and third born, all in my wheelchair.  I have laughed in it, cried in it, sang, danced, drank, eaten, broken wind (!) and most of all I have listened in it.  My wheelchair is always there with me.  The current chair has been more so – for this paragraph at least – it has been the only chair MBW, Monkey, Nuzzle and Scratch have ever known.

My chair can go fast, it can go slow, it can corner, it goes straight.  It’s quiet on a smooth surface, it’s noisy on the bumps. 

And for all the amount I wish I were walking today, I know that my choice of mobility now will be my noble stead – and I like the chair I have.

So when you see me next, if you know me, its ok to tell me that my chair looks nice, or it needs a clean.  It’s ok to tell me that my light up wheels make you smile or that having the word “Quickie” on the back is inappropriate in a professional workplace. 

But not everyone has a suitable wheelchair.  They are expensive.  Each is custom made to the user and children especially go through them quickly as they grow.  So, on International Wheelchair Day, this is what I ask of you.  Please go to Whizz-Kidz Donation page and give them a little something if you can. 

And I’ll thank you for it – from my new Xenon, if I can.

The completion theory

I have done it. I know what I want and how I want it, in the way I would like it.

I have made a choice for a new wheelchair – the ease to push, the feel of the ride, the seat comfort. There is so much I think this chair will offer to me that I will be quite happy with it – the method of moving about leaves me really comfortable.

I barely used my feet with the wheelchair, I could move it with ease. I could push it up hill, roll it down again. I found it balanced nicely, requiring very little to for a gentle lift, requiring less to just bounce up a kerb.

Choice made. I am going with the chair that left me happiest – now I am going to be an impatient child awaiting for Christmas day again. Out of the Champion and the Xenon, I know which I want to arrive at the end of this long journey.

(And I still need to choose a colour!)

The Xenon Isotopes

xenon-001Its been a while since I blogged but that I’ll come to in another post. I’ve been with another Sunrise Quickie Xenon since Tuesday – this one with a set of 4 inch casters, drop down handles and an auto-folding footrest.  It also has the optional Frog Leg suspension casters.

As some people know, I’ve been finding this Xenon a much nicer experience than the last time – it has the less-raked front as well and feels a lot more comfortable to use.  It rolls just as nicely as last time.  One thing to confirm – this has pockets on the back and a security pouch on the front like the last one.

xenon-003My typical day will start with going on the train – this chair does it well and will climb the step without the ramp if need be.  This chair is quite composed on the train – it feels really stable and sturdy.  The brakes work well, which is a bonus(!) and the chair moves a lot more neatly in the tight spaces.

Once off the train, in the lift, out the lift and then this is where it does get interesting.  This chair takes no effort to get going and rolls nicely.  It goes nicely down the hill and doesn’t stop until I get to the crossing, which doesn’t require any extra oomph to get going again to get across quickly.  In fact, this chair is fairly smooth all the way to work.

xenon-002So, a tick in the box? Yes, near enough – although I think I am possibly getting too used to the Frog Legs. 

Going through the day, I find its sitting position is not too bad, considering I will usually transfer.  I sat through several meetings, went out for a roll about at lunch and wasn’t fed up by 17:00 – time to go home.

Fall down time – if you have someone tall to push you, they won’t like the folding handles. Its a hardship but if you’re 6ft tall, this is not the chair you want to push. I’ve just realised – “fall down time” – the handles don’t drop but you can see the profile difference.

Once up at the station, its not difficult to push along the platform, a quick shove up the ramp and I’m on the train again and off home. Now here is where I got quite fed up with the previous Xenon demonstrator.  Getting off the train, this chair has a less aggressive seating position and will do a roll back and jump off – without as much risk of killing myself as before.

So, it seems mostly positive? For the most part, it is – however there are some niggles, like the handles not level and a bit low down. The chair has a little bit of side instability (flex) like the Champion had but not as bad.  To lift it is a bit harder than the Champion, which you can pick up with one hand, this one has the seat in the way. Finally, this folds a lot bigger than the Champion and considering we have a VW Touran, it will take a lot of boot space up (a pain when you have a double buggy in the boot).

xenon-004So, some pluses and minuses – I have 3 days left with it.  I’ve really been enjoying the extra pockets, which saves me scrabbling around in mine for my keys.  Do I think I know?  I’m not sure. I was furiously against the previous Xenon, it had irritated me to the point of being prepared to put an order straight in for a Champion. I nearly cancelled this demonstration. But in the Champion, I found myself foot-steering. In this chair, I’ve not done it once in two days. I accept that I’m going to slow down (old age? Most likely) and that I will have to get used to it. I like the way both chairs look.

On Tuesday at 09:15 I’m meeting with the dealer, who will have the Champion with him again – I’m having one race around the car park in both chairs and then I will have made my mind up.

On 23 January, I will be confirming it – then I’ll tell you all, too.

Uncertainty in a procurement exertion

I’m not sure how this is usually meant to go… I have never been offered a serious choice in this type of change. I recall feeling really proud, strong, masculine (?) (manly?) in the champion. I really felt comfortable in the Xenon but I didn’t feel like I could always move truly like me… But almost something else.

I entered this process knowing it would be difficult. I think I probably had my heart set on a Xenon-esq sporty chair. Actually, I will probably end up with something a lot more sedate but ultimately comfortable.

But musing this over doesn’t change an underlying common element: I feel drained from this and very uncertain. Am I reading too much into the details? Probably. Am I wrong to do so? I think not. I am choosing a new pair of legs. I’ll be damned if this is going to be taken lightly.

At the moment, the champion is beating the Xenon. In a part though, its also down to how Sunrise have treated this potential new chair – I have not yet felt like they are serious about it, there is no attempt to make this experience about me, rather than being a pain in the backside.