Category Archives: Events

:)

Events

Ah Russ .. shite day or what !! I think you are so right to share on your blog and say how you feel.. so much better for you .. you really are to be admired . I honestly don’t know how you keep digging deep .. but then I read of all the amazing people who care about you , entertain you ..look out for you …. also the fact that the system works when you need help … keep on with your positive attitude ….and honesty …. big hugs C x

Shit

Events

So after a day of blood and catheter blockage, calls to the District Nurse for advice etc, my catheter finally unblocked itself and all seems ok.

At that point, I promptly had another ‘ accident ‘ that leaves me smelling like a sewer.

It really isn’t fair, all this.. but I shall take the hit and carry on.

It’s just that someone else has to deal with the mess for me, as I’m totally unable to sort myself out.  It’s that part that affects me most – the effect I have on other people’s lives.

 

Night time fun.

Events

My spasms were non stop at about 5.45 this morning.

Every time I breathed in, one happened. I can just about reach the light switch, if I can reach the control panel that elevates my bed, and then sits me up.

Having turned the light on, I could see that both my legs had fallen off the bed, so my body was pretty twisted in the middle. Furthermore, my catheter had got all tangled in the bed frame, so my penis was being pulled very hard from the stopper inside my bladder .

There was absolutely nothing I could do about it myself- I tried and totally failed to reach and pull either leg back into the bed, for a while. I realised that if I kept trying, I’d end up falling out of

I gave up and  guiltily called the house phone for help, which came.

i went back to sleep, after apologising and expressing my gratitude for the assistance.

This morning my catheter is full of blood, from the internal trauma… which I hope isn’t too awful. I won’t panic and just monitor the blood flow, which ought to stop?

Oh, and I’ve got toothache too.

Whilst in hospital two really large and old fillings fell out, and now I have pain in another tooth as well.

I made an appointment with a local dentist, explaining that  I can’t get out of my own Chair and into hers, and she’s cool with that. Things like dental issues seem so insignificant now, relative to my day to day difficulties, that I really don’t  assign any drama to them at all.

The amount of bleeding has diminished a fair bit, too.

?

 

Tuesday

Events

Whenever I put my chair into the stand up position, my body goes into crazy violent  spasm mode – like it did before my 4 operations. I do hope that this doesn’t mean it’s all coming apart again internally? As I can never tell why I’m spasming, I can never guess, let alone be certain, as to why it’s happening. I also seem to become quite lightheaded, when elevated.

Notwithstanding that fairly significant distraction, my days have been full of productive time, of late, doing various administrative tasks that have not been my focus for far too long.

I met up with a lovely ( crazy in a good way ) lady called Lisa, whose only connection with me is via my blog, which was a good laugh to be sure, spent time with my mother ( it’s been a while since the last time ), with my employment lawyer, Piers, with Cress and Toby ( Cress helping me in a very intimate bowel related way –   truly grateful ), with the always fascinating Paul Lambert, with my sister in law, Sam, and with my carer, Marie, and even seen ( fleetingly ) my daughters, who do seem to lead far busier lives than I did at their age, though doing completely different things to those available to a Welsh boy in the 70’s.

I’m making progress with accessibility to venues, and have arranged to send back my car to Motability, on the basis that I cannot any longer get into it to drive, it therefore being a pointless day expense.  In the pursuit of trying to save, I’m also very keen on trying to catch buses, rather than wheelchair accessible vehicles ( WAV’s ) as I can travel for free, tho I need someone with me to  get me up and down the ramp that comes out of the side of London buses … you press the yellow button on the side of the bus, the bus suspension lowers by about 10cm, sirens go off, lights flash and a telescopic ramp slides out of the side, and onto the pavement. As it’s about a 1 in 6 upwards slope, I’ve got no chance of getting up it alone, my fixed spine allowing virtually zero pushing power now.

Once in the bus, there’s always the slightly awkward moment when a  mum is legally obliged to move her buggy and baby out of the wheelchair space, it being a legal obligation for myself to travel inside that space, but I smile and apologise and the lady invariably jumps up and moves the pram for me. It’s not ideal for the pram to be in the aisle either, but there isn’t another solution.

Soon I’ll take delivery of the electric front wheel that fits onto the front of my chair ( see video – not me in the film – thanks to my stunt double (?) Phil, and his dog ( name unknown ) In fact, it might not even be his dog at all, it could be a random one chasing him, or being chased by him, depending on how you interpret it. Either way, as far as I know, no humans or dogs were harmed in the production of this video, despite there being no sign of abiding by the Highway Code by either Phil, or the dog )

It actually goes as fast as 30mph – there’s possibly the way I’ll next manage to very nearly, or definitely, kill myself. I don’t think that there is any obligation to use a helmet, or lights, but I will actually use both if I venture out at speed, or in the dark )

I’m not sure if it looks cool, or like something out of Wallace and Gromit, but I don’t really care.

 

 

 

 

On the Radio..

Events

Right then.. I’m on Radio 5 Live at 10.05 this morning, speaking to Adrian Chiles…

It’s totally out of the blue, after an email from him last night.

My voice is a bit crap today, but I guess they’ll amplify it…

I’ll try to temper my Tourette’s for 20 minutes, but  who knows how successful I’ll be.