Monthly Archives: November 2017

Ahhh the glamour of my sh**.

Prior to going to the Tower of London with my mother, I spent 3 hours in hospital being taught how to self irrigate my stoma …

That involves sticking a cone end into your hole and letting a litre of water flow in, and then being prepared for the same litre, plus ‘solids’ to come rushing out. In practice it kinda rushes out in bursts, rather than all at once. I have to pre attach a poop shute to myself so that it doesn’t pebbledash the wall in front of me, and goes into the bog instead.

Obviously the idea is that because I’ve done this, nothing then comes out until you do the procedure again 24 hours later in your bathroom. In practice, nothing did come out into my ‘bag’ for about 12 hours, but then did. I suppose I wasn’t properly flushed after the first go yesterday, then.

As i type I’m doing it again, being careful not to drop this phone into the bog. Whilst IPhones are now waterproof, you still don’t want to get them covered in shite, if avoidable…

Thanks Mum, for coming down, and thanks Dad for delivering her and collecting her. I think that arrangement was probably sensible as my Mum doesn’t have any inbuilt sense of direction, so isn’t guaranteed to end up where she is supposed to go.

She does have other qualities though, which compensate.

And also the Italian barman on the 69th floor of The Shard tried to proposition her. There’s got to be a lot of inappropriate jokes that could accompany that occurrence, but I’m not going to make any of them – at least not in this diary.

I see this band tomorrow.

Wacky would describe them, I’d say.

I like the video – he’s in a psychiatric ward and thinks he’s actually a National Express bus driver.. and the  medical staff are the bus hostesses…. the crazy guy in the wheelchair reminds me of someone…. can’t think who though..

12

My current carer finishes on the 16th and then I have 12 days of Christmas where I’m in a lot of trouble if I have no help.

My brother, Stu. has offered me Christmas shelter for some of that time, which is very good of the boy, for sure, but I’m still stuck between the 16th and the 24th, if anyone has any helpful suggestions, other than calling an agency ( and possibly / probably getting somebody not particularly interested in what they’re doing ) then please let me know !

Thanks!

I appreciate very much the many supportive messages I received today, and recently in anticipation of today.

Thanks so much to Mr Marky P for being there when it counted. Nothing like a practical man with a sensitive side.

I almost feel like I might consider going gay..

A comment … ( and no, not lame )

Hi Russ

Just reading your latest exploits.

Since reacquainting myself with you over the last few years and meeting your closest friends, I think I probably speak on behalf of many of us when I say that some of us really do understand the precarious nature of your well being. However despite understanding, none of us can genuinely conceive how frustrating, and at times, desperate it becomes.

Lame I know, but you have many more good days than not so good now and you still have an extraordinary number of friends to call upon in an hour of need – me being one of them I hope.

Shame we missed each other last week but I’ll see you soon.

Unhinging.

Today my spasming got worse and worse. Every time I tried to lean forward in my chair, the spasms pushed me right back. It went on for a long time. I noticed my attractive bag of wee didn’t seem to be filling as it should have done, as I’d ingested lots of water.

I then noticed that my groin area was wet. I called my carer from where I was and wheelchair’d back to the flat. I can’t get in without her help and I called her again. My spasms were getting worse and worse and my bladder was obviously not draining.

I called the District Nurse and they didn’t pick up, so I got help onto the bed and Rosanna pulled my trousers down. My stomach was very bloated and hard, my bladder evidently full and not draining. In desperation I syringed our the catheter balloon that holds it into my abdomen and pulled it out. Urine flowed out for a good 5 Minutes, soaking everything, despite desperate mopping up by Rosanna.

I spied a catheter box from across the room, not knowing that I even had a spare. Without really being able to see what I was doing I managed to insert a new catheter into my abdomen, and into my bladder, then syringing full thé 10ml balloon that keeps it in there. I’ve no idea how sterile my DIY was, but without help at my disposal I’d never have been able to do it.

Rosanna washed me and redressed me, and helped me back into my chair so that I could go out again to face the world, as I always try to do. She also stripped the bed and washed my sheets as I’m unable to access the washing machine myself.

I do try to be independent but really I’m so very vulnerable to unexpected mishaps, and need help at my disposal so very often. Without today’s help I’d have ended up completely soaked in Pee and ultimately helpless to do anything at all about it.

It really does affect me, that stark realisation.

What a day..:(

I met up with my old DW canoe partner, Piran, yesterday. We did a fair bit of time in a boat together, often smelling badly of urine.

I went down to the Thames with him on the IBot. I’d explained how they just don’t fall over, too many gyroscopes and in built safety features…

We had something to eat and talked about all kinds of stuff, and then headed back. I went off a kerb in 4 wheel drive mode. I heard the wheels spin and then I was falling backwards very fast. The iBot crashed to the ground, very hard.

If it had fallen forwards, rather than Backwards my head would have been smashed into the tarmac, probably breaking my arms/ ribs at the same time, as well as smashing the ibot control panel too.

A van driver ran towards us, and he and Piran got the thing upright again, though my legs were a bit tangled up in it, and eventually it sort of came to life and would drive very slowly in Low Down Standard Mode, but not do anything else.

There was a flashing ‘wrench icon’ on the screen which means you need an engineer. As there aren’t any engineers for it, I immediately thought that my stupid kerb manoeuvre had f’d up my amazing machine for good.

We made it back and I called my buddy, Keith. He asked me to try various things, pushing different buttons – but to no avail, the alarm kept going off and it wouldn’t work.

I remembered that I’d seen an advert on eBay – for $10 you could sign up to a guy that said he could fix ibots. I thought it was probably dodgy, but got in touch with him.

About an hour later, he replied, tho in moderately poor English, and I couldn’t understand what he was asking me to do. You can’t get someone’s phone number on eBay, so i thought we’d get nowhere. I sent my phone number to him, and to my amazement he texted me from Texas, asking me to call. I was half expecting a scam and to lose money, but hey I called him.

Alejandro andro was a bloody lovely guy, and he set about guiding me through a series of about 50 button presses on the control panel, putting in loads of numeric codes.

Incredibly it worked…. and Piran got on it and tested it fully. It didn’t fall over… or anything!

I can’t tell you how relieved I was. To have lost my regained ability to be at head height, after 4 years of being low down, was an incredibly sad thought for me, and I felt myself sliding downhill fast, inside.

I realise how precarious my ‘ contentment ‘ is, and how fragile I am really. I’ve had an upsetting week, with more to come on Friday. I can very easily see myself back in The Darkness, if bad luck  strikes, to be frank.

I still went to the RGS, to a lecture about the tracking of animals- bloody fascinating – and went to with Marky and Mikey afterwards. Mike kept falling asleep at the table, bless him  Must have been all my near death tales…

Today I go to help in a school, and then go to see a band –  Queens of the Stone Age  – at the O2 with Clare. I’m going on the iBot.

Wish me luck…

1922.

I went to watch a film about the 1922 attempt to summit Mt Everest on Friday, at the RGS, with Lily. They’ve recently digitalised all their ancient archive ciné reel footage. Almost a century ago, it was an incredible watch, a silent movie in black and white with occasional writing on the screen. A General Bruce led the expedition and 2 climbers got to within 1750 feet of the top, which at the time was an altitude record, the previous record being 24,500 feet.

One of the 2 climbers was Mallory. At the end of the film was written something like ‘ Our intrepid climbers failed on this occasion to summit, but will soon return, to get to the place on Earth that is closest to Heaven ‘

Two years later, in 1924, Mallory did indeed return, with his chum Irvine. No one knows if they did actually summit, but they did both get to Heaven, falling to their deaths,  dying in their attempt to get near it.