There seems to be no position left other than sitting in my wheelchair, when my legs don’t constantly spasm ( and often they do whilst in the chair too )

I got myself into the sofa just now for the first time in a long time.
My left leg kicked out and knocked over a glass, and now the floor is covered in small shards.

I can do nothing to remedy this mess, as my wheelchair has no wheels, they having gone to the bike shop for repair.

If they were on the chair and I was able to get into it, from the sofa, I’d almost certainly get 2 punctures..

Feeling trapped is a regular emotional challenge, as well as a reality.

It’s my first time in Amsterdam.

I last came to The Netherlands in 1986 ( I think ). That was to play rugby, with my Uni team.

Not being a drug taker, it’s never been on my list, tho obviously there’s much more here than substance availability.

My God, the whole of this country is on the verge of being underwater.. indeed most of it used to actually be.

I’ve made myself useful in the support van, as navigating thro literally endless canals and rivers, chasing bikes that can go pretty much anywhere ( down narrow paths and across foot bridges ) has not been easy.
The task has kept me distracted from thoughts of my imminent anniversary.

As I write, I’m struggling not to cry, so terrible is that anniversary now to me.

My spasms have reached a whole new level – now it’s proving largely impossible to get my legs to go straight – it’s like someone’s pulling invisible elastic tied round my knees, really hard, every few seconds.

It’s Day 2 of the bike ride that I can’t ride, where I’ve at least found a role as the support van navigator – using various Apps to track where we are, as well as track where the riders are.
Pistol Pete is driving and I’m in the other seat.
As the seat is 5 feet up from the ground, it’s a 3 man effort to get me in and out of the van, but it is achievable.

Psychologically it’s hard to watch them all ride, when I cannot, but it’s good to see them all again, en masse.

It’s T-3 today – 3 days til 3 years. Pete was saying that he still gets flashbacks to me lying in the road that day.

Made it to Holland.
Thanks to the guys for getting me there.

The downside ( isn’t there always one ? ) is that my spasms are probably the worst they’ve been. I’m having to hold on tight to the sides of my chair/ solid objects to stop myself jerking right out of my wheelchair.

I just can’t fathom this stuff.

Dear Russell,

Thank you very much for your inquiry regarding doing the London marathon in your Mountain Trike.

Unfortunately it will not be possible for you to take part in your mountain trike. Our events are run under IAAF, UKA and IPC Marathon rules, which prevent the use of mechanical devices that incorporate gears and chains.

Your mountain trike comes under UCI rules and IPC cycle rules.

Regards
Michelle

—–Original Message—–
From: Helpdesk
Sent: 08 June 2016 13:08
To: Michelle Weltman
Subject: FW: Disabled entry.

________________________________________
From: Russell Dawkins [rdawkins2@icloud.com]
Sent: 08 June 2016 13:03
To: Helpdesk
Cc:
Subject: Disabled entry.

Hi there,

I was paralysed 2 years ago, and now a wheelchair user.

I’d like to do the London Marathon in a chair ( I ran it twice before my injury ) and both times for charity.

My problem is this- my left hand is also injured permanently, making pushing a regular wheelchair impossible for 26 miles.

I do however have another chair – called a Mountain Trike – that I can propel along.
I enclose a picture. It’s a bit longer than a normal chair, but nowhere near as long as a racing wheelchair.

The fastest I can go in it is 5mph, so it’ll put me in the 5 hour category, at best.

I would need another entry for a helper, so that I can get help with ‘ toilet’ necessities.

Can you help with this query?

Best,

Russ Dawkins.

______________________________________________________________________
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Michelle Weltman | Wheelchair/Disability Coordinator
Tel: 020 7902 0200 | DDI: +44 (0) 20 7902 0203
Marathon House | 115 Southwark Street | London | SE1 0JF
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Registered Office: 115 Southwark Street, London, SE1 0JF. Registered in England No. 1528489. London Marathon Events Ltd is a wholly owned subsidiary of the London Marathon Charitable Trust Ltd. Registered Charity No. 283813

So I seem to have got my bladder under control with medicines ( tho I hate to speak too soon about anything positive..)

That means that, as it stands, I’ll go to Holland. A number of the guys had made some pretty impassioned pleas for me to go, which I did find very moving – thank you, fellas.

I kept up my Trike exercise today – pushing for a couple of hours along the river – all fine until it suddenly jack knifed and tipped over, throwing me out.

As I can absolutely nothing but lie there helpless, that’s what I did, until 3 ladies appeared on bikes, though they did balk a bit at the prospect of lifting me back into the chair, and who could blame them..

As if by magic, an old mate was out running and jumped into provide the muscle.
Thank you, Stu.

The fall has done something to my back, which seems to crunch and creak more each day now.

The operation, if I made it that far, would presumably stop all that movement – movement that is quite obviously NOT normal.

I met up with my friend, ARTI,yesterday as I said.
I couldn’t get my Trike into a coffee shop, so we had a coffee in a pub instead ( just the thought is weird ).

I went ahead into the garden at the back.
It’s quite a cumbersome thing to manoeuvre, the Trike, and I had to move 2 chairs to get close to a table.

It was a difficult process for me to do that, and involved a few minutes of hard effort and quite a lot of noise.

There were probably 25 people in that small garden, aged 25-35 and mostly men.

No one offered to help me.

I don’t know why that would be, but it is disappointing.

… then think again.
My day: T minus 7 ( 7 days til 3 years )

Woke up, having pissed myself.
Catheterised.

1 hour ‘in the bathroom ‘ – really not pleasant.
Pissed myself.
Catheterised.

Transfer to wheelchair
Transfer to shower bench
Shower
Pissed myself
Shower again
Catheterised.

Gave up on idea of going to work.

Transfer to wheelchair
Tea and fruit drink

Transfer onto bed, with shorts and pants and trainers that I’d put there
Got clothes on.

Transfer onto wheelchair.

Helped by Dani and using a rope device strapped to a girder, transfer onto Trike

1.30 Met my one time student, Arti and had a coffee ( good to see her )

Wheeled to a local park, having realised I’d pissed myself.
Catheterised ( too late )

4 pm Pushed 5 miles along the A316 to meet Pia for a cup of tea.
5.30 pm Pissed myself.
Catheterised ( too late )

Pushed 5 miles back
7.30 pm Pissed myself
Catheterised ( too late )

Transfer from Trike to wheelchair using rope ( and Dani )

Shower ( again ) to clean myself up ..

If you think that the 10 miles pushing the chair was the hard part of today, then think again. That bit was easy.

I trained hard on the arm bike most days for a couple of months – for a trip to Holland on Thursday, with the cycle lads ( Team WDF ) that were with me with I had my crash.

At the point where my spasms became so bad that my surgeon advised me to stop, I switched to going out on the Trike to stay in some sort of shape, plus came up with the idea of taking that to Holland so that at least I could do something there.. and not have to be pushed around by the lads ( I find my regular wheelchair really hard to push due to the awful curve in my spine )

In the last 3 weeks I’ve crapped myself 4 times… and am now for some reason that of course I don’t know about, I’ve been peeing myself constantly.
As a consequence the trip to Holland isn’t really a go’er. The lads can’t really be expected to change my pants every couple of hours…

It’ll be 3 years on Tuesday, a week today, that I fell from my bike on that lonely road. Not a day goes by that I don’t resent those surgeons for ‘ saving my life ‘and leaving me like this.

I’ve written before about how this injury can be different for some people, the less active amongst us. When I was in Stoke Mandeville, in my ward there were people who just seemed OK with it, whilst I was in complete shock.
There was a 19 year old girl who just seemed, well.. smiley. Her fiancée was in the hospital every day with her – I think he may have somehow stayed there?

I was devastated for her, for them, just assuming that their young lives and future were ruined by her paralysis.
The other day I found her ( via social media ) and saw that her profile picture was of an ultrasound scan of a baby ( yes, SCI women can conceive just as ‘ easily’ as normal women ).
I messaged her, pleased for her, but also assuming that life must be a huge psychological struggle, deprived of so much physical ability – as it is for me.

I was surprised by our conversation.

You’re pregnant ?????

I am indeed ?x

Jesus
That’s good!
And married?!

Yea sure is were over the moon and yea got married September and was pregnant end of January x

All you ever wanted?!
?

Exactly that x

And what about the SCI ?
That wasn’t on the list of things you wanted?
What do you do these days? X

No that wasn’t hahaha and at the moment being sick and lack of sleep is what I’m doing hahahaha x
How are you doing ? xxx

Tell me what you’ve done since Stoke Mandeville – briefly.
Other than marriage and getting pregnant ?

Not much really, had different appointments and sorting our house and stuff ahahah x

You sound happy? X

yeah I couldn’t be happier to be honest were away at the moment in our caravan we have in Great Yarmouth xxxx

Lucky you !
How on earth u get into a caravan???

? it has a ramp xx

To be honest, you never really looked like you really minded being paralysed, that much.
Anything that you miss about not being paralysed ?xx

So what’s your level?

T10
No, it hasn’t really bothered me much to be fair – erm normal bowels and bladder xx
Yeah that’s the bit I miss about being paralysed hahah xxx

But otherwise you’re pretty ok with the whole paralysis thing? Xx
I guess *** is always there to help you?

Yeah, I am to be fair, and yeah he is xx

To me, the above is just inconceivable.
Perhaps her family and friends call her ‘ amazing’ – that being paralysed hasn’t dented her at all – she’s just the same as before – but has a ramp for the caravan now.

She definitely doesn’t read this blog, and won’t ever.

I suppose if you never lived, you don’t know what you’re missing – as proven here.

She is indeed amazing – both amazingly lucky to still be happy, and amazingly unlucky to think that what she has is all there is in life.

But what do I know?