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.

3 thoughts on “A day in the life of a person with spinal cord injury ie me.

  1. Russell, I perhaps don’t visit your blog as often as I should, but every time I do dip in I am taken with the directness and honesty of your account.
    You probably know ‘Invictus’ by W.E Henley, if not I have written it down below. Until recently, I thought it was about a soldier and war. It is not. It is about a man resolved to find the inner fortitude to deal with his own inability to use his legs.
    I have a family member who is in a similar condition to yourself, so I have some idea of the desolate and dark places to which the mind can travel, and the monumental effort required to claw back from such places. It is therefore, with admiration for you that I quote the poem:

    Out of the night that covers me,
    As black as the pit from pole to pole,
    I thank whatever Gods may be
    For my unconquerable soul.

    In the fell clutch of circumstance
    I have not winced nor cried aloud,
    Under the bludgeonings of chance
    My head is blooded, but unbow’d.

    Beyond this place of wrath and tears
    Looms the horror of the shade,
    And yet the menace of the years
    Finds me and shall find me unafraid.

    It matters not how strait the gate,
    How charged with punishments the scroll,
    I am the master of my fate,
    I am the captain of my soul.

    1. Thank you for your words.
      I can’t pretend to have been as brave and ‘unwincing’as the subject of the poem, but the crossing from the seemingly bleakest place to the light is a journey that I’ve made, despite my fears that no light existed any more.

      Russ

  2. Well done you x I was very tearful reading of your struggles ……things we take for granted!
    You have taught us all so much and we are still learning from you.

    Love you loads Aunty Wendy and John

Leave a Reply

Your email address will not be published. Required fields are marked *