So today, I went home!
Not to stay, but just for a ‘ try out’ to see if I can actually physically cope ( by myself )
The OT ( occupational therapist ) Jenni, and the senior Physio ( Anne Marie ) got a taxi and visited where I live..
My list of tests was very short, so see below.
First, I had to get into a car ( the taxi ) As the hospital has an account with only Addison Lee cabs, we could therefore only go by one of their cars.
It mattered not that A Lee didn’t actually have any wheelchair accessible vehicles available, and that ALL Black Cabs have, by law, to carry ramps to allow wheelchair access, or that Uber have a special section for wheel-in accessible vehicles… I wasn’t allowed to leave here in anything other than an Addison Lee cab….
So, I managed to first ( with a hand from Jenni ) to get my legs in, to the front seat passenger side, then I could reach up and grasp the handle above the door with my left hand, then do a one armed pull up, making my body lift and swing into the car, pulling with my right hand near the gear stick area – you have to try to visualise all this…
First Job accomplished, Anne Marie having put my wheelchair in the back.
Then the driver drove to Chiswick.
All ok so far.
I then needed to get out of the cab and into my chair.
As down is far easier than up ( that’ll be the gravity ) swinging downhill with one arm ( my right hand holding the internal handle above the door ) getting back into my chair is relatively easy.
I then had to prove myself independently able to wheel up the ramp to my front door, which I was, though it’s much harder now as my back doesn’t flex at all, making me more liable to tip backwards out of my wheelchair and smash the back of my head against the road/concrete ( with all the potential head injury complications that would then be added to my paralysis ) To that end, I’d asked the OT to attach ‘ anti tips’ to the back of my chair, whereby it can’t tip back so far that it turns over.
So my list of tasks:
I need to be able to do a few things, and I asked the ladies to let me try them, unassisted, though being very nice they kept trying to help me when I appeared stuck !
Ok, so first I had to get into bed.
That wasn’t actually that difficult, transferring bum from chair to bed mattress – gap of about 20cm.
Before I fell back I had to grab my right leg with my left hand, so that as I fell back, my right leg would come with me.
That worked, and my left leg sort of came with my right leg, so they both ended up on the bed, bent up so that I could still touch my knees with my hand, which meant that I could pull on a leg to access my foot, in order to remove a trainer, and then remove the second.
Then I had to prove that I could take off my shorts and pants, all this being exactly what I would have to do in real life ( and I did in America for 5 months all alone in a 2 star – unassisted – no help for the paralysed – hotel, 2 yrs ago )
It was as well that I removed my clothes, as I’d had a ‘ bowel accident ‘ and required cleaning up, and a change of pants and shorts ( and also T shirt, as the crap was on that too ) which the very kind Jenni and Anne Marie did for me, to my eternal gratitude ( as I had zero chance of doing that by myself )
Having been passed new clean clothes, I was able to thread my shorts and pants onto my legs and, by pulling on the side of the bed, roll over sufficiently to eventually get my shorts and pants up.
If I didn’t do all of the above ( exactly, exactly ) as I’ve described, then I would not be able to get my clothes off, or then back on.
And obviously I have to smile my way through it, and not get upset or frustrated ( and thankfully as I’m currently extremely positive I can definitely do that bit )
Having sat myself up, by pulling on the short section of removable bed rail we bought some time ago, with my right arm, and putting my left hand behind my back and pushing at the same time – I could then get my replacement, non soiled, T shirt, on.
Next was transferring back into my wheelchair from the bed, which was fine.
Next I had to prove that I could get onto the padded bench that I sit on to have a shower. As that is a 10cm sideways transfer, that is pretty easy, though then getting my chair away so that it doesn’t get wet by the shower, isn’t so easy.
Please bear in mind that if the chair were to roll away, then that’s the end of that, I cannot retrieve it. I would have to deliberately fall to the floor, and somehow get myself closer to the chair and then try a floor to chair transfer on a slippery bathroom floor.
Have I ever done that?
Thankfully I’ve never once let my chair roll out of arm’s reach.
Next,a transfer back into my chair – easy – and a wheel back out to to the cab ( maybe 2 minutes.
A transfer back in ( as described earlier )
There’s a reason why I didn’t have to do the last thing on my list. That was getting on and off the toilet.
As I am now so rigidly fixed with inflexible ( for ever til I die ) metal bars, it’s not physically possible to ‘ do my bowel care’, as we paralysed peeps call it.
That’s a life changer, that unexpected eventuality.
What that means, in plain English, is that I can’t have a crap by myself, and never again will be able to.
No, it’s not going to change, the metal bars are not going to go all bendy after a bit….
From now on, as they do in the hospital here, another person other than myself, has to reach inside me and remove my waste products – not a great job, but it’s actually what some, and only some, are trained to do.
I’ll have to have the District Nurse(s) around every day to do this, for the next 3-5 months.
I can’t go away for the weekend/ go on holiday etc etc until I have a colostomy bag fitted ( another operation and hospital stay ). All being well, this will happen in late December ( Xmas present? ) or else January.
I can’t have it done now, as the risk of infection ( through getting poo on and in the new screws and metalwork ) is too high. If it does get infected, they actually have to take it all out, treat an extremely difficult infection, and then put it all back in again.
I think that the educated opinion is that it would actually kill me in the process, so best avoided?
Post colostomy bag op, having a poo and emptying the bag down the loo, will take 10 minutes, and I’m away!
Excited about having a colostomy bag?
Well I might be the first, but God yes, I really am!
Swapping 5 hours a week on the loo and all it’s complicated misery, or having the District Nurse’s hand up my bum every day ( no ‘ I hope she’s got warm hand jokes’ – I can’t feel sensation nor hot or cold, nor pain, nor pleasure ) for a bag that I have to empty every second day, is a no-brainer.
Cue the ‘ can you get a colostomy bag and matching shoes?’ jokes from all my irreverent mates – sorry boys, I’ve beaten you to it.
It’s 4.39 am and now I will try to sleep for a few hours.
As I am very much wide awake, that may not happen tonight.
Never mind, I shall not let it dent my spirits.
Thanks to Jules, for visiting this morning, then Neal for wheeling me outside, then to Melissa and James and Ben for putting up with me until 10pm and even buying me food and some wine.
Thanks to Lissy ( my sister in law ) for holding ( twice ) a plastic bottle under the table so that I could flip the valve that let’s Pee out from the ‘ leg bag’ that I’m currently using, and to Lissy and James for getting me back to the hospital too.
It’s been a good day.