Half an hour to go, and I just have a bad feeling about this one – no reason at all, just a feeling.

If this is my last post, then I just want to say thank you for all the love that I’ve received over the last 3 years.

To the very few that have not been so understanding, I forgive you.

I’m not a religious or superstitious type, but I just feel different about this one.

Lots of love,

Russ

All cleared out, and flat stomach once more.
It’s 3.15 am and I’m still awake.
My op is at 1 pm and then I’ll wake 5/6 hours after that.
In Wales we say ‘I hope I don’t wake up dead ‘
I hope I don’t either. Or it’ll have been all a bit pointless.

Now closing eyes.

So yesterday Dani came and I ( with help ) got from bed to wheelchair, and she gave me a push into the sun and fresh’ ish air of central London. It was midday
My loyal mate, Russ S came too ( and stayed til he and I went back to the hospital.
I am allowed out, in small doses ( though they don’t actually say how long for )
Just as well, since we got back at 9pm.
Being in the chair is, just by itself, tiring but is all the rehab I need, for now.
I burn calories using an NSD Powerball and a Powerspin device, both harder than me going to the very small hospital gym with a physio here. She would only give me easy strength exercise to do, so I’d rather do my own thing tbh, and she gets that, so she’s not offended.

Thanks, Russ for your amusing company, and the shandy, and thanks to Marky P for the other shandy, and for Aaminah and Saf for coming to see me only a few days after their wedding day. I used to test Aaminah’ s eyes, from the age of 14 ( her, not me – that wouldn’t be allowed ) and that sort of ‘inspired’ her to come and work for me, and end up with a full time optical career. Now she’s a friend, too.

It’s fair to say that I slept pretty heavily last night, after what was to by aching body, a hard day.

Those iBot’s then. Is it only me, and small boys, that thinks they’re pretty cool?

https://race-nation.com/sponsor/e/54342

If anyone would like to sponsor my buddy, D Stainer, whose colleagues were killed by terrorists in Paris recently, above is the link.

Just seen the undoubtedly talented little person, Ellie Simmons, win Gold in the Paralympics.
That’s fantastic. She’s a great girl, and still only 21.

In the same race, the 200m medley where you do 4 lengths, each a different stroke, there was a lady who had no arms at all, and was actually leading at half way.

For a start, how can someone with no arms even swim at all, let alone do the crawl, breaststroke? Then there’s the length of butterfly – that’s just actually not possible, literally, without arms.

How can that lady be in the same race as people with 2 arms and 2 legs, even short ones by virtue of dwarfism?

That’s surely, surely not fair.

Or is it just me that thinks like that?

Ok, so two op’s down, and one to go.
Friday the 16th at 1pm is the time, and they’re very punctual here.

So, today was a bit of a shock.
I went out, in the afternoon, with a lovely lady called Eva ( Pia’s Mum, in fact )

Having had my wheelchair adjusted fairly majorly by my incredibly helpful buddy, Rob Stainsby, under, if you like, my supervision, it being myself that knows what’s wrong with the chair now, and how I imagine it should feel when I’m in it ( God, long sentence already ) I today tried it out, albeit with Eva actually doing the pushing.
We went outside, and she bought me a 99 ( with flake ) as have a number of people before her – do like ice cream ( not gonna lie )

It dawned on me that, despite me still not having the correct adjustments, that I am now so incredibly fixed in one position, that there is so much more that I cannot do. I fear that I’m going to need help with lots more things than I did before.
I have, for example, a wheelchair bag that dangles underneath my chair, that I lean forward to access with my right hand.
We went into a shop and I wanted to buy something. I tried to lean forward and reach it with my hand, and realised that I couldn’t touch it. Neither could I reach the bag that is behind me, on the back of my chair.
Yes, I hear you say, but you can put the bag in a different place! Yes that’s indeed true, but the facts remain that now I no longer have a back that flexes ( at all ) means that twisting my body is no longer possible ( at all ).
That makes all sorts of things nigh on impossible – as in even bloody more impossible than they were already. Having watched the Paralympics, I would now not be able to do anything other than archery or shooting.

That’s a pretty depressing thought, isn’t it? All the crap I’ve gone through, and I end up worse off … PLUS my spasms have NOT gone – though they may yet after Friday’s operation.
So now I’m a bit f******. They can’t take it out, because I needed it done, or I did eventually, for sure, or I’d be at 45 degrees after a few more years, but I’m overall worse off than I was.

To my own surprise, I didn’t just break down, having just met a guy called Keith Pritchard, who was also paralysed.
A fellow South Walian bloke, like me, poor Keith had developed Multiple Sclerosis twenty five years ago. MS is a horrible condition that is often so progressive to the point where you really can’t do anything at all, and you die of one complication, or another.MS is something that any one of us can just wake up with, male or female. I could even get it as well as being paralysed already – now there’s a thought. Keith, who did give me his permission to write about him, was now in a situation where he wouldn’t be able to self propel a chair so either needed a pusher or a power (electric) chair. He’s been like that for quite a while, so he bought something called an iBot, for 23k, in 2002.
It’s not the first time at all that I’ve seen pictures, or film clips, of an iBot, but I knew that they’d gone out of production, as basically they couldn’t sell enough to make it viable.
I have to say, that it’s one thing seeing a video, but it’s altogether different seeing one in action. Keith just happened to be coming in my direction, floating on only 2 wheels, so I stopped him to chat about him and his ‘chair’.
Being Welsh, he was a lovely guy…. and with a very quiet voice due to his lack of lung power, through MS induced paralysis of his diaphragm.
I asked him to demo his iBot to me, as in to do a few tricks. I have to say that I was amazed. It can go up, onto 2 wheels, and then go up further still ( but still move along ) with the rider being 6 foot tall.
It spins around on the spot, and can travel at 5mph on two wheels, and 10mph on four wheels. It’s impossible for it to tip over, as is totally self balancing whatever the terrain. You could rush up and give him a shove, and rather than it fall over, it senses you immediately so that it feels you’ve run headlong into a brick wall. Incredibly it can go up a flight of 22 steps, with no danger of tipping over (okay, so the loft and and spiral staircases are still out, but they are already, so that’s cool).

The good news is that I knew that Toyota, as in the car maker, had teamed up with the original inventor, and had already announced that they’d be bringing it back, but with the benefit of endless funds and a decade or more of tech progress.

Click the link to have a read
http://www.theverge.com/circuitbreaker/2016/5/23/11744714/ibot-wheelchair-toyota-dean-kamen-revival

In the wheelchair community, there’s an etiquette thing, that you only have an electric chair if you can’t propel your own with your arms. Now that I have lost all spine flexibility, it drastically reduces the amount of power that I can put into a push on my wheel rims.
Also, I don’t give a flying f*** about the ‘rules’, as well as the fact that I don’t think anybody that has ever met me would call me lazy.

I think that this thing is my future.

I video’d Keith, in his iBot.
Click that link too.

I have asked my surgeon if this is how it’s going to be, and he said that I’ll get used to it… so I asked him if that meant some flex would return. He said no, and that he and his guys had deliberated about me and what to do, but that they had no choice.
So that, is definitely that.

Hi Russ,
Firstly, it would be lovely to meet up with you again. Let’s do it!

You’re so much more of an example to many than you can imagine, believe me. I can’t begin to imagine how the last 3 years have been for you, if only to speculate how the world must appear in your eyes. Working with you first time around left me with deep impressions, not only from a traumatic perspective but also from your incredible resilience.

When you told ********** and I that you’d considered suicide, I felt shocked but then I had to stop myself and really understand what you’d been through. I can only reassure you and comprehend these feelings as somewhat ‘normal’ throughout the course of your recovery; unacceptable in the grand scheme of things but ‘normal’ as a reaction to a major life event. People really don’t know their own strength until life really tests them in one way or another..and to me this may define life more than for those who have never suffered any form of hardship. I’m not trying to play down anything but, in answer to your comment about remembering you, your amazing strength to move forward was impressionable to say the least. And it shows to this day, especially having seen you on ITU straight after your op and the subsequent days following.

I will keep an eye on your blog; I’d like to see how you’re doing. I also wish you all the best for your second op tomorrow. I’ll be back in London from 12th sept, in any case let’s arrange something..I’ll get ******* to come along too!

Stay strong as you are, Russ. Love to you and your family.

**** 🙂

So it’s been one extreme to the other.
Horribly constipated and looking 4 months pregnant, to shi****g myself no less than TEN times in 30 hours.

I now have a flat stomach ( which tbh paraplegics of my level, shouldn’t have )
So that’s good?

Watched some Paralympics here, on the telly. Speaking as someone who is now properly disabled, I do wonder about the criteria for inclusion in the Games.
I don’t see how having been born with one hand missing, makes you particularly disadvantaged on a bicycle that doesn’t even have brakes …? Having ridden a bike with one hand in a plaster cast for a week ( just before my crash in June ’13 ) I can confirm that it makes very little difference to cycling at speed…

And the guy playing just incredible table tennis holding the bat in his mouth, because he’s got no arms … why is he pitched against guys with all four limbs, albeit one leg that’s a bit dodgy?

BUT….

The Chinese girl with one leg, winning the swim, and she’s called Lim Ping? Surely not?!
They didn’t even make a joke, f’ing PC world ?

( no, not PC World where you bought a printer, I meant Politically Correct world )

Operation now scheduled for Friday.
Five days til that, then wake up mentally deranged til the following Tuesday, go through constipation then the Grand Release, and then the option of some time here, or in North London ( for some specialist rehab for a few days/ weeks ) and then home.

Thanks to all my very nice visitors that I’ve had – it really does take the edge off.

X x ‘s to all of those.

So I find myself in an unexpected situation, that of being far straighter, and more upright, BUT being less able than before the operations.

Positives?

I’ll be able to reach 2 inches higher?
I’ll look better?
I’ll be able to sit ski better, as turning right and left will now require the same technique, making it far less confusing.
I’ll once again be able to use my stand up wheelchair ( and feel less self conscious as I shan’t be twisted all over the place )
Pushing along in my chair MAY be better, through me being symmetrical?
The result is permanent, as it really is impossible to break now ?

Downsides

Significantly less able to turn my shoulders either side.

Can’t touch the floor anymore, from my chair ( though the chair could actually be made lower, so maybe not? )

Can’t turn over in bed? Tho hard to say as not in a normal bed, here in hospital.

Loss of ‘ forwardness’ means pushing chair will be just my arms, and not any help from the little bit of trunk control I had before.

Getting into and out of my hand bike may have become virtually impossible by myself now? Again, I don’t know, but my previous technique won’t work now, I know that.

Going to the Loo possibly much harder, through less available movement – I won’t go into the detail, as it’s a bit shocking.

Transfers are looking like they’ll be a lot harder, as they rely on being able to lean your top half forward – and I’ve lost about 30 degrees of ability, which is massive.

Should I have done this, then ?

Yes, as my spine was deteriorating fast, and would have continued to do so – giving my crazy spasms and non stop pain that I couldn’t feel, but my body didn’t like, making me ill a lot of the time.

I therefore had no choice.

Excuse my language.