My spasms are continuous, non bloody stop.

It’s 2.50 am and it’s impossible to sleep.

I don’t have a UTI, I’ve exercised and I’ve ‘stood’ in my standing chair a lot.

This isn’t supposed to be happening.

It’s difficult to feel cheerful!

A man came up to me last night, whilst I was out.

I didn’t recognise him, but he evidently did me.

He said that I used to canoe on the same stretch of river that he rowed on ( note that canoeing is not the same sport as rowing – one boat goes forward, the other backward…).

He was incredibly complimentary about me. Fair play, he had had a few beers, that was apparent.

I apologised for not recognising him, but he explained that we’d never met.  He went on to say that when he realised that he’d not seen me on the water for a while, he’d asked someone if they knew where I was, and that person told him about my accident.

He said how upset he’d been to hear of my calamity, and how good it was to see me alive ( if not totally well ). He asked if it was ok if he gave me a massive hug, and I said that it was very much ok.  My friend ( Pia )  who was with me almost burst into tears at that point.

He said that he needed me to get back on the Tideway ( that’s the part of the Thames that’s tidal, and definitely isn’t the easiest stretch of water ) and that he’d do anything and everything he could to help make it happen.

We realised that we had friends in common, and he said that he’d make it happen.

We exchanged numbers, and details.

I don’t know if anything will come of this, and if it doesn’t then it doesn’t, but I thought it was worth  writing about.

He was called Matt, is straight, and single. He’d make some girl a lovely boyfriend. Any hot ladies out there that read this, please feel free to pass their details to me, and I’ll pass them on..,

I don’t have a key to the building I live in.

A lady just walked past me and opened the door 20 feet from where i sit , in my chair at 2 am, letting herself in.

She could have asked me if I needed access. I’m sure she wondered why a guy in a wheelchair was  outside the door to the building, but she couldn’t quite bring herself to say something to me.

It does nothing for my faith in humanity.

Having said that, when I wheeled into the traffic on the main road outside, it all stopped. There was silence, no horns, no shouts, no attempts to drive around me, no one got out of their cars, everyone just stopped.

Idea for traffic calming measure – Transport for London ( TfL ) just need to employ a whole bunch of depressed spinally cord injured people in wheelchairs.

I I have quite a few regrets, but none that I can change.

I met this lovely guy maybe 5 years ago where we skied together in France for a few days.

Over the years I’ve met a lot of people who for some reason want to keep in touch for years after.

Maybe knowing at least one Welsh person is fashionable?

Anyway, Joost emailed me today, as he has so often over these last 2 years ( I’ve no idea how he found out about my accident )

Hi Russ,

A fast hello from Belgium to let you know that i try to follow your blog from time to time.

I read that you have up and down moments. We only skied together a coupple off days but i enjoyed them very much. i’m sure that you still bring joy to a lot off people!

Whenever you have to be in Belgium or around Brussels let me know so you pass at my place.

Do you have plans for skiing this winter ?

Im triing to brake the Belgian record speedskiing.

Hope to see you on some slope

I send you lots off positive energy!!

Joost
 

I suppose what im saying is that the world is full of good people .

And that I’ve met my fair share of them.

Hey Russ,

Just did a catch up on your blog..

Dont really know what to say mate, although I am glad you managed to escape Portugal and the A&E Unit,

I have to agree with your counselor and your friend Lisa – You are going to have to realise your value one day – what you bring to this world and the people around you, its huge.
Listen, we never spent a whole bunch of time together before your accident but at fellow athletes and sportsmen we have a kind of mutual respect – you inspire me Russ – as you do to so many others around you, you need to know this,

Lisa talks about the awareness that you have highlighted for a whole number of things – this makes a difference in other people lives, it really does. You are doing this.

Anyway, I am not trying to change your feelings or your thoughts or the internal war that rages on inside you, you need to win that one yourself, inside your own mind, but all I can say is that you have a wife and daughters who should be the one thing that drives you to keep fighting, they need you more than you know..

You have so much to offer this world and the people around you, I am not in your situation so cannot offer any words of wisdom or advice, this is your battle mate, you have to win it yourself,

Just keep fighting Russ, keep fighting – dont give up, you are stronger than that.

Hello flower!
Been reading the blog, as you know (thanks for quoting me!). Bummed that you’re still deep in the throes of depression. Very glad though that you’re still alive and very literally soldiering on, as it’s evident that this is as arduous as a yomp across South Georgia with a full pack. Please keep seeing the counsellor. And be aware that you’re grieving; these things don’t just suddenly switch over into bright and shiny acceptance of your new situation. Frankly, I’d still give a fucking kidney to have my Dad back for a day, and that’s almost 15 years ago.

I saw these cards and thought of you when I saw the final one. You’re not a burden, you’re a human.

http://www.upworthy.com/7-new-nontraditional-empathy-cards-that-say-what-other-cards-can-get-totally-wrong?c=ufb1

Love  the link to the things that SHOULD be written in cards… 🙂

Ive just been to an event hosted by a contact lens company called Coopervision. 

When I arrived a very smiley lady rushed up to me and gave me a kiss ( on the cheek )

I did recognise her, though it had been a while.

Liz now works for Coopervision and spoke to me for ages. She relayed to me that a few years ago she had worked for the Specsavers training team, and that at her first work event, feeling very self conscious, I had been a delegate.

She said that out of the hundred or so people there, that I was the only one who came to talk to her, and in doing so made her feel welcome, and that she’d always be grateful to me for that.

I told her that so often these days I feel the same way, in this chair – like the new kid at school, or the new boy in the office – awkward and alone, just wanting someone to come and talk to me.

Thanks to Liz, Pardeep and Paul for not making me feel that way, today

I belong to an on line forum of people with spinal cord injuries.

This was posted by a young lady recently injured.

This injury leads to a lot of sadness.

Does anyone have their bowel care done on a normal bed by district nurses? I’ve ordered a split mattress adjustable divan double bed for my partner and I. I talked to the DN about it and they said it was fine but now, 3 days before its due to arrive, they’ve decided its too low and they can’t do my bowel care on it. I can’t afford the vertical lift mechanism, its another £700, and the alternative is that My husband  and I carry on having to sleep in single beds in seperate rooms for ever more. Its just seems so unfair, will we never get to be a normal couple again what do other people do?

I used my sense of invention in desperation to find a way to get the bloody catheters in, and avoided a stay in Portuguese A&E.

A&E in a foreign country is no place for someone with my potential complications – it was frankly hopeless in a large London hospital a year ago when I had an extreme allergic reaction. It’s absolutely not that I fear a terminal outcome, more that I really don’t want it to be in a hospital corridor at 3 am in Faro.

On that subject I thought quite a lot when I spent 5 months in America about the possibility of being held up at gunpoint, either on the way to or from the hospital, or whilst in my less than desirable ‘hotel’. Over and over in my head the same scenario played out – spaced out gunman holding a gun against my forehead, asking for the money, or he’d pull the trigger, and me smiling and saying no, do whatever you want with that gun.

But I was never in the right place at the right time, it turned out, to enact it for real and see what happened next.

Lily and her lovely friend Ella definitely enjoyed our short half term trip to the sun.
Ella’s lovely mum, Cress, helped me with lots of stuff, making it all possible ( for me )
My state of mind doesn’t lift, as I’ve previously said ‘ on holiday ‘ as I’m not, in the former sense of the word.
The challenges of being in situations not suitable for myself unnerve me, the opposite of the reaction I’d get pre injury.

This week I had an assortment of unpleasant issues ( any one of which would completely ruin a trip for a healthy person ) but that now are the new normal for me. I get through them as usual, but despise them nonetheless. I don’t think I’ll ever get to the point where they don’t matter to me. At the moment I’m on the flight back, after being semi carried onto the plane. My legs are twitching, my stomach is bloated, yet I can do nothing about it.

Nothing at all, except accept it, accept that it’s how it’ll always be, so crap compared to before, when it was just sitting down in a cheap and small seat on an economy flight.
Before I was totally indifferent to cramped airplane seats; now I’d do anything to feel the ‘normal’ joy of an Easyjet flight.

Nobody looking at me would realise that there was anything wrong at all, except maybe that I was moving my legs somewhat erratically.. unaware of my complete lack of control over them, or my total inability to move from this row of seats by myself.

Lots of people carry on with the attitude that ‘at least I’m alive’. Do I feel that way? I can’t say that I do. I don’t feel alive. I have the misfortune of knowing exactly how that feels, and it’s not this.

I tried no alcohol for a whole week ( not difficult to do ) as I was curious to test the effect on my mental and physical state.
Verdict : no benefit in abstaining. None at all. I had more problems than usual, actually, to my surprise.

It won’t hold water as a clinical trial, but on the basis that it doesn’t help ( me ) to not drink, I’ll continue to exercise that option whenever I get the urge.

Dani had recommended that I read my own blog, from the start, saying that it would benefit me ( she read it all, recently ). I resisted for quite a long time ( just based on instinct ) then caved in and started at the start.
I read as far as the second week of August 2013, only 7 weeks into my new ‘life’. It took me back to an awful time, of near death and coma for me, of other people’s guarded optimism/ of the use of humour to disguise the awfulness of the situation / of the evident stoicism by some, including Dani. I didn’t read the word ‘paralysed’ once, it’s obvious use having been avoided ( optimistically ? ) completely.

I’d got to the bit where I was writing the blog myself, clearly in some hope that all was not lost, that some hope remained. The medics didn’t ever say to me that I had zero chance, even though I think it was pretty obvious to them.

I was reminded of just how many people came to see me in Toulon. Some of them would have thought they were probably paying their last respects, that being the medical likelihood for a while; some would have been realistic inside yet optimistic outside, and some for sure just certain that I’d make a full recovery ( I got quite a few cards saying ‘get well soon’ ).
There were countless emails expressing concern from an awful lot of people, offering whatever help that could be given. In some cases that was the last time that they got in touch.

I didn’t smile at the images, the positive faces, the amount of effort that had been made for me, rather I wished desperately that I hadn’t put so many people to so much trouble and pain.

I’m sure my story and the way it’s been told can and will help other people to understand this ‘process’ but for me to relive it at the moment is too painful.

I’m in portugal for a few days.

Its not a holiday – not for me – just paralysed in warmer weather.

I can’t get my catheters in (so can’t pee ). There’s blood etc. Legs are jerking non stop, really hard, so there’s no chance of sleep

What little sensation I have around my middle is at the moment unpleasant.

If I can’t get the next catheter in, I’ll have to go to hospital.

Is there no end to this?