Ok, it’s my sister-in-law, Lissie, who’s fault it is that this blog exists…
🙂

Hi Russ
Just to say, you’re far from bonkers to be excited about getting a colostomy bag.
I imagine that actually a lot of people are because it solves some painful or life-restiricting problems.

A close relative had a bladder condition that I didn’t realise at the time was actually cancer. He kept having these warts in his bladder removed in hospital under anaesthetic and it left his bladder scarred and made his life very unpleasant with pain and difficulties going to the toilet. He had his bladder removed and a Urostomy bag fitted and it gave him a new lease of life, I can tell you. He was a significantly happier man after that.

I suspect it’s the same for a lot of people who have ostomies – life is better with than without.
I know it’s yet another thing to take on, but I was so glad to read you’re welcoming this solution.

Big hugs
****
x
PS 5 years in Social Cervixes and I’m totally blase about all matters poo-related. Done the District Nurse job myself a few times.

Now I think about it, I could probably have a lucrative specialist career in Soho.

Spinal cord injury, paralysis, awful bowel care problems, non stop UTI’s depression, attempted suicide, 3 massive spine operations… etc etc…

And now they make me wear this hat to chemically ‘wash’ my hair….

Tell you what though yer air smells lovely afta!

🙂

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.

Job done!

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?
No.
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.

I’ve realised that there are adults in Britain who have never tasted a Caramac.

How can that be possible?

#youveneverlivedtilyouvetastedacaramac

A 9 hour sleep … a non stop one, at that – or at least two 4.5 hour ones.
When I wake in the night, the first thing I have to do is look at my watch to see how long I’ve been lying in the same position for. If it’s been for over 2 hours, then I must press the button that sits the bed up, reach down with my right hand to my right leg, get hold of the skin on my thigh and tug it to the other side of the bed from the side it’s on, and then do the same for the left leg.
Moving both allows me to then grip the side bed rail and pull hard with my arm to force my torso to roll over a little.
That moves by bum.
If I didn’t do the above, I’d end up with pressure sores, that would be resolved by staying in bed for weeks/months, even a year.
Then I press the ‘ down’ button, and try to go back to sleep.

I suppose the equivalent in the non paralysed world, is waking up,jumping out of bed, doing 20 press up’s and then getting back into bed and going to sleep.

Easy, yes?

Thank you to my recent visitors!
Cherie, Angela, Maggie, Toby, Dani, Cress and Mike Smith.

And for my present from Vee, in the post!

Poor Bradley Wiggins…

‘ Done’ for taking an asthma medication…

If he had bloody asthma, there is NO WAY that he’d even be able to rise to the level of a Tour de France winner.

I have asthma…. and trust me, I know how it strikes in races, and that you can’t always stop it.

Guilty as charged, Bradley.

Will sport ever be clean again?

I doubt it very much.

I’ve been following the furore and am a bit bemused as to why no one has said ‘ but hang on, Bradley didn’t actually have asthma?
If Bradley had asthma, then he’d be the figurehead/ posterboy of the Asthma Society, and they’d be saying ‘ Don’t let asthma rule your life! Bradley Wiggins has asthma, and he’s just won the Tour de France! ‘

When your child grows into adulthood, you do miss the child, but it’s compensated by gaining ( in my case ) another adult that you love.

Thank you to Pat, Dani and Lily, who overlapped eachother, like a well practiced relay team.

That filled my day up.

And that’s exactly what I need.

Russ

A big THANK YOU to Anne and little Carys.

Very yummy indeed. Xx

on my mood changes, probably evident ( to the perceptive or qualified ) by the ‘ tone’ of my blog posts.

If my blog posts are positive, it suggests I’m ‘ happy/ ok ‘.

If my posts are negative, then the thoughts in my head are unhappy/ laced with dread, or even suicidal.

So, note to readers of this diary :- if I’m positive sounding, then please, please if anybody feels the need to send me a message, then please make it positive, to maintain my frame of mind.

If I’m negative sounding, then I am low and the best thing for me is to ‘ sympathise’ with my thoughts.

If I’m negative and I recieved a message that’s very positive, then I don’t believe what you say. You can be as well intentioned as you like, but I’ll react negatively.

Here’s the most important one : if I’m happy sounding, then please, please, please don’t say anything critical to me ( even if I deserve it ) because all I think is ‘ Jesus, give me a bloody break, I’m just trying my best, despite all the crap I go through, to be happy ‘ and then… I get very, very sensitive and take criticism badly. Though also, I still don’t want overly positive stuff either, as I analyse it as misplaced optimism.

I know it’s a little bit complicated, but I, at least, understand my own reactions.

A psychiatrist here explained it all to me today…. And now it sounds painfully obvious.

I’ve repeated what she told me, to anybody that reads this.

At the moment, I’m actually happier than I’ve felt in 3 years and 2 months.
My 10, yes 10, visitors today ( Vee,Chris, Mike,Paul Dom, Rob, Pia, Amber, Lily and Ziggy, her BOYFRIEND ) will all testify, I’m sure, to my upbeat mood. As my visitors ( all the males ) arrived, separately, at more or less exactly the same time, and with a total of 3 bottles of wine, it quickly became a room party… No kidding.
My 2 daughters arrived a good 90 minutes later, within seconds of eachother, yet having no idea that the other was coming, then bickered their way through the next 90 minutes, with me adding in anything that kept myself amused. Lily’s poor friend, Zig, sensibly stayed way out of controversy, but kept laughing.

Anyway, at the risk of having to repeat all of the above, can nobody please message me to upset me in any way at all?

I’m SURE that this analysis applies to each and every, that’s every…one of us.

The old ‘ he obviously got out of the bed the wrong side this morning’ being far truer than it sounds.

Pre injury, I’d say with some conviction, it being applicable to MYSELF, that when you get up you can CHOOSE whether you get up with a smile or a frown, that setting your outward mood ( to others ) for the day.

I now know, that actually ( at least for me ) I cannot choose my mood. It depends whether I wake up having had flashbacks, or covered in my own excrement, for example, or I might ( far more rarely ) just being glad I’m not dead.

For now ie the last 3 years, I’m unable to ‘ just pull myself together’ if I wake up feeling negative. I concentrate on the fact that I’m paralysed and can see nothing else at all.

Living with me throughout this is a guessing game, to put it mildly, and I appreciate very much those that have unwaveringly tolerated me. The more contact you’ve had with me, the more you’ll have witnessed.

Dani’s had the worst of it, having had the most exposure.

Most people that I’ve met who have suffered spinal cord injury, seem to tell me that they lost ( or almost did ) their spouse, along with all, or most of their friends.
And what they don’t understand, and neither did their loved ones, is that post paralysis, these crazy reactions are totally and utterly normal….

Russ.
( typed with a smile on my face )

But tonight, re-posted WITHOUT a smile on my face.