All posts by Russ

Day 3 here.

So every now and then when I irrigate my insides, i get all this black stuff that comes out.

Google says that if it’s black then it’s most likely to be blood, but what I get isn’t ‘ tarry’, rather it’s like horse manure – if you have ever smelt or looked at mature when its old, its really fibrous and full of vegetable matter, and doesn’t really smell like poo. Well that’s what comes out of me – as though it’s stuff that’s been there for ages, deep within me, fermenting away. I’m definitely bloated, and have been for a long time now. I’d hoped that having a stoma would make all the bowel stuff more straightforward rather than less, but it hasn’t – it is different, and overall better than before I’d say,but straightforward it is definitely not. I never really know what’s going to happen day to day with it, but live in hope that one day it might settle. Perhaps once all this black stuff is out ( if indeed there is a pocket of it inside me somewhere ) it’ll get better, but I really don’t know.

 

On  another note, it was fantastic to briefly see Ken Curtis thé other day – Ken, what a lovely, sincere fella you are ( praise indeed, given he’s an American ! ) I value every message i get from Ken – hes one of the Good Guys for sure.

Good to see Miles Watson too – ive known him since he was a newborn, and now he’s 21 I think – and a great lad. Good to see Neal, and Larry before I left the UK, and Dan too, who is always there in the background keeping an eye on me, so to speak.  I miss doing normal stuff with my old mates – skiing, cycling in particular. This time of year they all go skiing and I find it hard to even listen to them telling me about it. I can’t however pretend that the world doesn’t go on, and if they were paralysed and I wasn’t, I’d definitely still be skiing and talking about it to them. I sold my ski boots 2 days ago for a pittance, but they went to a mate, and they weren’t any good to me anymore, so it doesn’t really matter – but still it hurts ( quite a lot, inside)

Ola!

Actually it’s not a lot warmer, and it rains too, but hey, the weather has never been something I really think about – obviously I’m not that British ? – after all, you can’t do anything at all about the weather, so why talk about it at all? You just have to dress properly, which is the bit I invariably get wrong – always wearing too few clothes is my error. Pre injury it didn’t matter, but now that I get  far colder because I can’t move lots of me, I get colder much more easily, which actually does bother me psychologically as well as more physically – I just don’t like it that I cannot tolerate the cold anymore, even though it’s bloody obvious that I can’t possibly be expected to.

Anyway, I made it to the Algarve – the day of all my possessions being moved out coincided with me having to go and have lots of X-Rays in hospital ( as I’ve been convinced that my fixation in my spine is moving again ) As usual, my days are never easy – moving is supposed to be about the most stressful thing you do, but in my case I get a bit of extra pressure on top just for good measure, with a 4 hour chunk of the same day being dedicated to hospital stuff.

As I need so much stuff every day for my paralysis thing, I couldn’t possibly commit to everything being moved out on the same day, so the next day, as well as leaving the country to live elsewhere, there was lots of packing of my essential stuff to do, and then taking that with me to the airport, as well as taking stuff and putting it into storage, before midday. And oh, also that day I took delivery of a different car, as I found it ever so difficult to get in and out of the one I had, after all the titanium was added to my spine 18 months ago. We used the car, which is like a Mr Magoo car, to go to the airport, with 3 large bags packed in around me ( full of paralysis typa survival stuff ). It’s a car that I wheelchair into the back of, up a ramp, and then stay in the chair for the ride. I am in the back, so not driving it, so my Carer has to do that bit, as well as fixing all the clamps to my wheelchair before driving off, but overall it’s ‘ easier’ and will definitely mean I can go further than I currently do, with less complication than I currently have. Once I’ve pimped it up a bit, with a full body karma sutra images  car wrap, spot lights on the front, and a bangin sound system, it’ll be a real head turner, like a Gangsta PopeMobile… tho of course I’ll have to run those modifications by the Motability Scheme that provided it.

Now in Portugal, i have slept a fait bit more than I normally do, 2 days in,and tried to reduce my spasms by getting help to turn onto my front whilst in bed, so that my stiff legs get stretched in a different way, from their normal seized up position of bent in the chair all day, or semi bent in bed, as they just don’t straighten, and I can’t make them, obviously.

Tonight we’ve been out for a cycle ( me on the Triride ) in the dark, Ashley and hér Lovely son ( thank God they were with me too, to help massively on the last day, and to make the huge transition far more palatable ) down to the beach boardwalk, which was cut short by the cold, but was nonetheless pretty cool to be honest. Without the big city light pollution that im now used to, it is seriously dark when it’s dark, which is how it is supposed to be, after all. My bike lights     in real darkness assume a different use from their use in London, which is almost purely to prevent you being run over by a bus, or motorist in a hurry to get back 2 Minutes earlier than he/ she otherwise would.

My various legal ‘ battles ‘ continue no matter where I am in the world, though im conscious already how much less im inclined to use my phone, other than for essential admin that I can’t avoid or ignore.

Ive been drinking mint tea, using mint from outside the place hère, in a teapot, which did have an unusual flavour. Having just stirred the pot, it turned out there was ‘ something extra ‘ on those leaves- a large caterpillar  – maybe some more careful checking before we make the next pot….?

P Day.

So today I move to Portugal.

Who’d have thought it? I leave what was supposed to have been the matrimonial home, in Chiswick, for an apartment in the Algarve. It’s not going to be permanent I hope, but hey you never know.

I have mixed feelings, but ultimately I had no choice at all, so I’m being as positive as I can be.

Its definitely warmer there, though I’m not supposed to sit in the sun – or i get a bloody big hat that doesn’t blow off as I can’t bend down to pick it up if it does…

Thank you.

To Cress and Toby for throwing me a surprise leaving party/ drinks

Very touched to see everyone, and also for them all to meet Ashley.

Today the removal guys came, but thanks so much for Dan’s guy’s significant (!) help, as well as Hanna’s, Krisztina’s and Ashley’s.

 

Big love. 

Funny guy?!

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Whilst all sorts of people ‘ pretend ‘ to be disabled, this is happening.

A Post on thé Paralysis Group that I belong to –

 

April 2 at 12:10pm
So it’s finally happened.
I got my letter through on Thursday that my Disability Living Allowance  is about to end and I have to apply for the new Personal Independence Payment ( PIP )
Now, I’m a T4 paraplegic of 16 years, below left knee amputee of 16 years, below right knee amputee of 1 year and insulin dependent Diabetic of 46 years (not as important I know). I’m forever on bed rest with sores and shearing to my buttocks and so although I know I have nothing to hide I am absolutely bricking it after reading all the horror stories.
What makes it worse is that my DLA finishes on the 19th of this month and my wife and I are finally getting a 2 week holiday starting on the 16th. We’re only going to Northern ireland but we’ve waited 2 years for this.
Anyone got any advice? I haven’t even made the phone call yet because of it being Easter weekend.

Family time :)

Today was a good day. I got to be with family at Easter.

Admittedly not my own relations, but the next best thing – with Ashley and one of her boys. We went by Tube to the South Bank and the Tate Modern, seeing the latest array of largely nonsensical piles of  stuff, with pretentious titles and descriptions… most of it seeming to have some tenuous link with erotica … tho not if you are remotely sexually normal.

My favourite installation was the thing in the picture – called ‘ wheelchair steering mechanism with clock and bag, with balanced plastic cup‘  ( Artist unnamed )

It demonstrates the fragility of life by the possibility that the plastic cup could at any point fall off, once the wheelchair starts going along… and then end up being run over by the wheelchair wheels, themselves symbolic of a previous misadventure…..

Makes you think, right……?

Aka I just made up that just now, like all the rest of the bollocks on display.

But we did have a laugh, so job done ✅

Thanks to Ashley and Otis for taking me out!

Xxx