All posts by Russ

A day in the life of a person with spinal cord injury ie me.

So, this was the plan.

Wake up at 7.30, cup of tea and an apple and a banana, do catheterisation in bed to empty bladder, then transfer to wheelchair, wheel to another room, get help into my ‘standing frame ‘ to stretch my hip flexor muscles and strengthen my leg bones through weight bearing ( if there’s a cure I need my legs to be able to take my weight, and not snap ), get down into wheelchair, wheel to loo, remove pants, transfer to loo, sit there and ‘intervene’ until fruitful, clean myself up, transfer back onto my wheelchair, wheel to bed, transfer onto the bed, put on special shorts with electrodes in( already wetted ), transfer onto wheelchair, wheel to special bike, transfer onto bike seat, attach feet to pedals ( very difficult), attach leads from bike battery to shorts, pedal with arms for 2 hours, making legs fire up and go round too, exercising my arms, my lungs, and my dead legs. Then detach leads, transfer to wheelchair, wheel to bed, transfer to bed, remove shorts, transfer to wheelchair, wheel to shower, transfer to shower seat, hold on for life itself whilst washing myself one handed, including my ‘nether regions ‘ by tipping to one side then the other, turn off shower, dry as best I could, put towel on wheelchair seat, transfer onto wheelchair, wheel to bed, transfer onto bed, having put clothes on bed, pull clothes on, transfer onto wheelchair, and leave house.
Simple! Estimated finish time midday.

The reality:
Tea, apple, banana, catheter, wheelchair, standing frame 30 minutes. so far, so good.
Realisation that my pants contained something extra, and unplanned.
Had to sit down onto that unwelcome guest to wheel to the loo. Then get pants off containing my new friend, without being able to stand up first, necessitating a little spreading of my pal.
Transfer onto loo seat – further sharing of the contamination.
What followed was seemingly the excretion of the contents of my whole intestinal tract, aided digitally, as per normal now.
60 minutes later, having used a whole packet of wipes and a roll of paper, and several flushes, I was ‘ready’ to transfer back to my ( paper covered ) wheelchair seat, though very much unsure of my state of undercarriage cleanliness.

I wheeled to the shower, transferred on, having put a soap covered towel onto the seat, and washed, as planned, though not having exercised yet.
I transferred back onto the chair, towel on the seat first, wheeled to the bed and transferred onto it, clothes already there. Still planning to exercise, I pulled on pants, and transferred back onto the wheelchair.
Looking down, I saw that I’d wet my pants…. So,got them off,washed myself again as best I could, got onto bed, put another pair on, transferred to chair, wheeled to bike, got on ( having given up on electric pulse shorts for today ), got onto bike and arm pedalled for 30 minutes.
Finish time: 12.30.
Far from simple.
In fact, pretty crap.

3 months ago, I’d have felt suicidal, now I accept it.

It won’t happen every day.

But it will happen sometimes. And I have to be prepared for any plans or commitments I make to be totally messed up by unforeseen events. Work, family events, social occasions – all liable to be affected, but on occasion, rather than consistently.

So, if you read this, and you invite me to something, and I’m late… Cut me some slack, as life can be a little complicated for me.

Every single person reading this will have a story involving their own shit. The thing about this injury- spinal cord – is that every single day there’s a shit related event. In the world of spinal cord injury, very many of the injured, given a choice, would rather regain control of their bowel and bladder functions, than walk again.
Given today’s event, perhaps you can see why.

What was good, if there is any good in all of this, is that I was able to deal with it all myself, alone.

And that was inconceivable not long ago.

Strictly Come Park Club.

So, with 6 weeks to go before the big event on December 6th, tickets are selling fast.

The 11 dancers are training hard, including my own wife.
The word on the street is that the boys are best… Naturally;)

The latest update is that Sophie Ellis-Bextor is one of the judges, a Chiswick girl herself, and a former Strictly winner.

If you haven’t bought a ticket, then why not?!

It’ll be the best thing on in London that weekend, if not in the whole of December.

Copy and paste this into your internet browser:

http://www.theparkclub.co.uk/sections/strictly-charity/pages/buy-your-tickets

USA.

So I’ll probably go back to America in late January, and until May.

Thats a long time, living fairly indepently, as a paralysed person. It’s a scary proposition, for all the physical reasons, plus the emotional ones.

The people that work there are all incredibly friendly, including Dr Susan Harkema, Dr Mike Stillman, Jamie Ochsner, and Sean Stills , but they’re not ‘friends’ – well not as yet, anyway. So I’ll be living in a sort of hotel/ hostel, a mile or so from the research centre, in the winter. I’ve never been a TV watcher, but fear I might have to become one ( that’s if the room has a TV! )

Basically then, if you want to come and visit me… You can!