I have just come out of hospital after a bit of major surgery so I thought I better tell you all about it.  I've just had the "Clam ileocystoplasty procedure done on my bladder but it will take up to six months to see the full effect of the operation.

 

To start at the beginning I have been having trouble with my bladder for a couple of years now.  Nothing serious but the level of capacity was continually dropping and eventually this would reflux back towards my kidneys and cause me problems in the future.  I had spent a lot of time with the doctors and nurses at Stanmore working on the different types of procedures available to me and it eventually became clear the "clam" would be the best option for me personally.  On one of my visits to Stanmore and by pure chance I bumped into a guy outside the gym who'd had the "clam" and he raved about it saying it had been the best thing he'd had done.

 

With his words still at the back of my mind I agreed to go ahead and waited for my time to come up which was Wednesday Feb 6^th.  I was admitted on the 4^th which I thought was a bit early but they had a good reason, they needed to clear me out and that meant my bowels.  Now here I should explain what the "Clam ileocystoplasty" procedure actually is in basic terms (if you want the details then Google it), well the clam procedure as it best known is where the bladder is sliced open in a clam shape and a section of your bowl is cut away, unravelled, washed (I would hope) and then stitched into your bladder to create a bigger football of a bladder thus alleviating the problems I was having with my ever shrinking one. 

 

So there I am on Monday 4^th after just arriving at hospital, sitting on my shower chair above the loo with a very long book waiting for the very strong laxatives that the nurse has just given me to take effect.  Same procedure the next day until I was all clear, lovely!!  Oh and I forgot to mention I would be nil by mouth from the 4^th until at least 10^th and that meant no liquids as well.  The only good thing was I that could lose up to a stone in weight so there are always positives to be had! The 6^th finally came and off down to surgery I went, a few sniffs of the old gas and away I went.  I don't really remember much of that night but when I woke up the next day I didn't feel too wonderful.  If there are bonuses to be had out of any situation then it's that I have no sensation below the chest so no real pain.  I did feel very groggy and nauseous but not too much pain which was good.  By the next day I was up in my shower chair having a wash and even fancied going to the café as I felt great, but that lasted until I got to the end of the ward and then I just wanted to go back to bed again.  No pain and sensation can be a good thing but my body was shouting at me that I had to take it easy.  The next few days I decided to spend pretty much in bed as I felt it was the best place for me and I didn't hear anyone arguing.  I also had several tubes coming out of me from all different places so it was easier to stay put.  I had a supra pubic catheter, I had a drain for the excess fluid from outside my bladder, a tube up my nose, a drip to hydrate me while I wasn't eating or drinking and a normal catheter up my willy so they had me pretty well pinned down.  Each day one of the tubes would be removed and thankfully it was the one in my nose first which was horrible as every time you swallowed you could feel it grating in your throat. Finally all that was left was the supra pubic which I had to flush out each day as the patch of bladder would continue to create mucus for several weeks.

 

By the following Monday I felt ready to leave but everyone was telling me to stay put as I had to remember it was a big operation I had had.  Wednesday I made a break for it and was allowed home.  My mum agreed to come and stay with me as I was told that I needed to be in bed for the best part of two or three weeks only getting up for a few hours a day.  I set up a computer next to my bed so I could work and made a stack of DVD's that I could watch.  Friday was stitches out day so I called the district nurse to come over who I hadn't seen in at least a couple of years.  The wound was very much like a caesarean scar but about 3 times longer (I am told) reaching from one side of the stomach to the other, at least 8 inches long and just above the hair line.  The nurse took the stitch out which is just one long piece of thread as it's stitched underneath to make a neater scar.    Now I just have to take it easy and flush out the supra for a few weeks and hopefully all will be well.

 

I am told that it will be a while before I see the real benefits of the surgery but it won't be long before I have to start capping the catheter so I can start building the capacity up again which I am looking forward to.  Hopefully one day very soon I will be able to live life without a catheter and a leg bag which will be great if I get there.

Saturday 19th January 5am. That's the date and the time of the start of my next adventure. I had a received an email from Nick at Parasport during the week telling me about an event I might like to Know about;
An unusual Guinness World Record attempt was taking place at the Eden Project, St Austell, Cornwall. Wheelchair users from all over the country being invited to establish a world record for the largest ever gathering on ice. This is a record that has never been set before. The record attempt was being coordinated by Leanne Grose to celebrate the launch of her DVD Leanne's Chair Workout - which was filmed at the Eden Project.
So at 5am I got out of bed and started my journey down to Devon. I had borrowed my friends sat nav so that I didn't have to worry about directions and the sat nav told me I had 224 muiles to go. It was dark, raining and 5am!! Not a time you would normally see me up and about. One good thing about driving at 5am is that there is no one else on the roads so I may have pushed the speed limits a little bit!
Arrived at the Eden Project just after 10am which was pretty good going and went down to the ice rink to meet up with people. The Eden Project is wheelchair friendly if you take in to account that's its build on a hill!! So basically you can only really go one way and that's down. Once at the bottom there is a wheelchair friendly train that takes you back to the top again. The car parks are all accessible but I did have to ask for help from a guy to push me up a hill that was just too steep to do on my own (and I did try, I promise). Therefore I would say that The Eden Project is totally accessible for a wheelchair user as long as you have someone with you for the steep parts.

Back to the Wheelchair World Record attempt, the event started at 11am so the areas around the rink started to fill up from 10am onwards. I moved around talking to people and handing out flyers and was really pleased to meet up with a couple of members to our site; Rob Chillcot and his girlfriend Sarah. As 11am approached everyone got on the ice rink and had great fun going round the rink and spinning round in circles on the ice. Afterwards the press took loads of photos and we had a speech by the organisers. People then went off in different directions; some to go and watch the wheelchair dance show by Chuffs and others to where Leanne was doing her book signing. I watched the wheelchair dance show and was very impressed by the co ordination of the dancers and how good it looked to watch.

 

  

That was it then, event over and now for the drive home, another 224 miles ahead of me!! As I got on to M5 the heavens opened up and it pretty much rained the whole way home. So much so that I was concentrating so much on the road that I missed my exit on the motorway and had to divert which added another 30 miles to my trip. Not a happy bunny I was!!! Got home around 6pm so not a bad round trip to Devon and back in just over 12 hours.

Phew I was knackered though!!

 

 

On Friday morning I arranged to meet with Juliette Francis at the White Lodge. The White Lodge, based in Chertsey, supports disabled children, adults and their families or carers in Surrey and the surrounding area. They provide a specialist children's centre offering daily therapy services, nursery education for young children with Cerebral Palsy and they have youth schemes providing overnight activity breaks at their Tree Tops accommodation or in the family home.

The White Lodge also support physically disabled adults in developing interests and achieving individual goals by offering services within a variety of locations. These include therapy services, creative arts, leisure and life skills, information technology in the Karten Computer Suite, supported volunteering, support in finding employment and in accessing other local facilities.

I met with Juliette and Jacqui Bremner and started by talking to them about the wheel life. They loved the idea and are looking forward to telling their members about the site. I then got a tour of the complex and it was amazing to see all the facilities they have for working with disabled people. They have a great outdoor adventure playground for children and are currently building a new £2 million pound complex where they will have health suites, computer and IT rooms, therapy rooms and a café and recreation area where people can meet and socialise. It should be ready in June 2008

I first heard about the White Lodge through my dad who had supported and raised money for them through his company almost 20 years ago so they have been around for a long time. 45 years to be exact and they are totally funded by donations, so if you can help then get in touch with them. Go to  http://www.whitelodgecentre.co.uk/.

 

Welcome to my page. I set up The Wheel Life with my best friend Pete who I went to school with all those years ago and he has been my best mate ever since. I had my motorbike accident 4 years ago and went to the Royal national Orthopaedic Hospital at Stanmore in London. I had a pretty shakey start when I got out as I managed to contract MRSA which meant all the metal work they put in my back had to come out, so the first 12 months of being at home really wasn't too much fun. Eventually though with the help of family and friends I slowly began to rebuild my life by just doing the basics at first. Learning to drive again, getting back to work and venturing out on my own. A big leap forward for me was when a great friend of mine was getting married and he wanted me to come on the stag do. Amsterdam seemed such a long way away but I forced myself to go and it was decision that changed everything for me. I did still have mixed emotions as I was lifted in and out of bars and clubs but it did make me realise that my home wasn't actually going to be my prison.

The idea for The Wheel Life grew from when I came back from a skiing trip to Colorado with nine other wheelchair users organised by The Back Up Trust. We all kept in touch for a few weeks but then slowly everyone got on with their own lives and contact was lost. With the explosion of Myspace, Facebook and other community sites I began to think that a site for us wheelchair users could be a great way of reaching out to others around the world.

The wheellife went live September 07 which is the 4th anniversary of my accident.

 

At the beginning of September I received a flyer through the post for something quite different I thought, a fashion show for girls clothing designed for wheelchair users! The flyer looked professional and the event was in aid of Motability so it had to be worth a look and I hadn't been to a fashion show before, so I thought it might be a bit of fun. Pete and I booked our tickets and made contact with the event organiser and Wheelie Chix-Chic founder Louisa Summerfield cheekily asking for backstage passes, well why not try when there are going to be beautiful women there!

  

The day of the event arrived and I wasn't quite sure what to expect when we got to the venue, although the flyer looked great I didn't know how many people would be turning up and how much like a real fashion show it would be. All my doubts though disappeared as we approached the venue. At the entrance to The Café Royal, Regents Street there were two smartly dressed men in Wheelie Chix-Chic t shirts ushering us up the ramp and inside (help was there if needed) where we were met by two more ushers directing us to the lifts. Once out of the lift we were greeted by a waiter with glasses of champagne (nice touch) and then directed to the main seating area where we found a bustling room of people waiting for the show to begin. At this point I realised I was the only male wheelchair user in attendance but I wasn't bothered as I had come to enjoy myself and meet some new people.

  

The show started at just after 8pm with the presenter & comedienne Jan Ravens acting as host for the evening. The audience was divided down the left and rights hand sides of the room with the catwalk in the middle and the girls entering from behind a screen at the end. I had somehow managed to find myself sitting right at the top of the catwalk where the girls exited so was in their direct line of site as they entered, not sure this was the best place to be?

The show turned out to brilliant with the girls all wearing wonderful creations by designer Amelia Ursache, who had been chosen to design the range by Louisa after consulting with many designers. The clothes have all been made so that they fit and can be worn comfortably by wheelchair users. This means zips in the right places, wider arms for when pushing and fastenings to help get in and out of them while sitting down. Amelia has created a range for summer and winter and the whole collection can be viewed at www.wheeliechix-chic.com. After the show everyone mingled together around the bar and it was a great opportunity to meet and make new friends.

All in all it was a fantastic event that I thoroughly enjoyed and look forward to the next collection coming out. Maybe next time they could include some fashion for men!