Thanks to Ilona for rescuing me from a lonely night in with my own company – bad combination of just me, myself and I.

I really don’t do well when I’m alone.

Now it’s 2.30 am and only the bloody spasms to keep me awake.

Went to an art exhibition today.

It was in Olympia, in the exhibition hall.
All the work was ‘ contemporary ‘ and in the main pretty cool.
Definitely lots of talent at large.

I went to exactly the same Hall a six months ago, to a ‘ fayre’ called Spirit of Christmas.
Both today and last time, all the stuff was for sale. Last time the average price of something was probably £20, this time probably £5,000.

The last time I was there I was actually amazed by how friendly people were – the vendors and those walking about. So many smiles it was crazy.

Today a thousand people ( all adults ) must have ‘looked through me ‘ – only 2 Chinese ladies smiled at me.

It reminded me of one of my first wheelchair outings – to Queen’s Tennis Club. That day I felt like nothing.
Today it was the same – but I’m better at dealing with it.

Draw your own conclusions about sections of Society?

So I got a call from my surgeon, as arranged.

Bio – no growth of infectious organisms

S16 – bacteria DVA negative

Histology – didn’t show evidence of infection, but there is inflammation

Urology to send all letters to surgeon(and results of urine stuff).

L3 and L4 discs def not normal – think should do posterior instrumental first (major op to correct 36 degree curve/ scoliosis) then a week or so after, do front (though side incision – smaller op) which take out abnormal tissue with L3/L4 cage to support spine at the front. Straightening and keeping him straight.

In prep, need all info from urologist and liaise with microbiologist at London Bridge to see what organisms he has been growing so can give best antis to limit infection in surgery site. All letters and all urinary microbiology.

What is the metal work type that French put in spine – titanium. Who manufacturer is? Try to find out – and they will check records their end first.

Ballpark figure for surgery – 2nd week of July. Hospital for 3 weeks – out beginning of August. Book rehabilitation bed for 2 weeks following that – out mid/late August.

It’s 1.20 am and the rapid tremor type spasms that are now so familiar as a UTI are back.

I expect to hear tomorrow that the recurrent UTI’s are due to the infection in my spine…

Resolving one should therefore resolve the other.

I desperately hope.

I’ve had less spasms since they stuck the long needle into my back and withdrew some stuff to test.

It didn’t hurt, but the local anaesthetic wasn’t necessary as I feel nothing over most of my back in any case.
Only my shoulders really have proper sensation.
Despite mentioning this to the doctor who was sticking in the needle, he said the usual – ok, now a slight scratch sensation’ – it seems to have taken over from the Carry On Doctor ‘ok now you’ll feel my small prick ‘ – as the expression of choice.

I said ‘ no, I won’t feel it’ but he still couldn’t stop himself saying it again when he put in the next needle 2 minutes later.

Insensitive, no pun intended.

I think that the volume of stuff that they took out to test may have reduced the fluid pressure in that infected area, giving me less spasms, but that’s only my theory, and I’d expect the pressure to build up again soon anyway.
As I write, there’s a fair bit of jerking already in fact.

As I’ve been banned from getting into my arm bike until further notice, I’m gonna have to find something else that burns calories and doesn’t aggravate my spine.
I automatically reduce my food intake without even thinking about it to keep the intake/expenditure balance level, but I’ll want to do something for my sanity.

We watched ‘ Touching the Void’ earlier on the telly. I saw it years ago and read the book, and was horrified by the challenges that Joe Simpson faced after he :
Fell and broke his leg
Had his rope cut by his climbing partner
Disappeared into a bottomless cravass.
Dragged himself out to find himself miles from help
Fell at every step in agony as he tried to reach somewhere better.

When I last saw it I was blown away by the bad luck that he encountered at every turn.

Today I felt I understood what might have been going through Joe’s mind as things kept going wrong despite his efforts.

Joe did eventually get there, despite all the obstacles in his way.

Recognise this situation ?
I do, often.

Oh shit there’s ******
He’s in a wheelchair! I heard about an accident?! Shit !

Oh shit there’s ******** she’s wearing a wig and has lost 3 stones, just like someone who might have cancer and is undergoing chemotherapy !?

Oh shit there’s XXXXX I’m sure he used to have TWO real legs, not one that’s made of plastic ??!

Fuckfuckfuckfuckshitfuck!
What the hell? What do I say?? What facial expression shall I pull??!

Got it! He/ she’s got a slight tan! Phew!

‘ Hey! You’re looking so brown!! Where’ve you just been for your holidays?! How long for?? How was the flight/ yes, awful that airport , the queues ! I was delayed for half an hour there once ! Anyway, good to see you looking so well, byyyyeeeee…..

Think I got away with that.
Didn’t I ?

# awkward.

So I had a very long MRI scan ( that does soft tissue/spinal cord/muscle etc very well, and then a Cat Scan after that.

There were no cats anywhere to be found in my body, but apparently it’s also very good for looking at bones.

I saw my consultant – very ‘old school’ typa guy, quite formal/ def not one to cast doubt or comment on any previous medic’s failure to pick up a longstanding massive inflammation in my spine / calls me by my surname only/ well dressed / reading glasses on top of head/ keen not to say anything at all that may later prove to be in any way inaccurate – so deliberately vague ( ish ) about everything – after that, and I asked him a lot of questions. I did actually apologise for the amount of them, but did say that as it’s all private medicine ( on insurance – obviously – or else I wouldn’t be here ) then I could feel free to ask him as many questions as I wanted to, which ( almost ) got a smile.

Anyway, he explained that in all likelihood I had an infection in 2 vertebrae, that had been there for at least a few months ( I asked him could it have been since September and he did the ‘ vague ‘ thing )
and that my inflammatory blood count was 101 ( rather than less than 1 ).
I would need EITHER/OR/BOTH 3 months of antibiotics / an operation to remove some of my infected and rotten spine with a replacement non metal ‘ cage’ put in whilst the bone re-grew to replace the stuff cut out.
I could do no spine aggravating exercise for months, and no straightening op would be considered until all infection was gone ( as metal screws and rods would all attract bacteria that would bugger me up for far longer and be far harder to get rid of )
He didn’t use the word ‘ bugger’ , that was mine.

I get sedated tomorrow, and a needle stuck into my spine ( look out you could paralyse a patient doing that – but I think I’m ok ) to withdraw some gunk from the area.
That’ll be analysed and he’ll let me know on Friday what he thinks.

Now you know all I do ( all 12 of you )

Thanks for reading.

I was thinking earlier .. when I was here 3 years ago and people were desperately hoping that I wasn’t actually paralysed, there wasn’t room in the waiting area for any more people … now that I am definitely paralysed I just got the one visitor.

Cheers , Toby.
Thanks for the chat, and the company, and the Maltesers ( I’m sure you ate most of them ? )

When I think about the fact that pretty much everything has become more difficult, rather than less difficult to do – all the physical things, I mean – it now makes sense.

The pain that I can’t feel has manifested itself as spasms and rigidity. When I see other paraplegics, they are able to ( with their hands ) move their legs about pretty easily to helpful positions ( to get into cars/ out of cars/ onto bed etc etc ) very easily. I have been increasingly unable to do that stuff, everything having gone stiff below my injury. I’ve actually put on about 6 pounds in muscle ( below my injury ) as my legs muscles have been contracting, and growing. Whilst it’s not particularly aesthetic to have spindly legs, it does make life easier when they’re lighter when you’ve only got your arms.

I try to see some sort of light at the end of this long tunnel, even though the best case scenario isn’t exactly rosy.

I feel tired most of the time and I feel ill.

Instinctively I suspect that it’s psychosomatic, now that I know I have something unpleasant going on inside me, but then I’m not sure, as I am very tired despite doing no exercise at all.

I’ll find out by the end of the week exactly what the latest piece of bad fortune is, and then perhaps it’s upwards from there ( other than the downwards of major surgery and drug regime )
I go into hospital on Monday morning, but maybe only for 2 days.

For now though time is passing even more slowly than usual and I seem less able to concentrate again.

I figure that it’s logical to stop doing the things that make me spasm, on the basis that the bloody spasms are a sign of being in agony ( that I can’t actually feel ).

Of course I’ve been doing the opposite for ages – doing stuff that is supposed to stop spasms – like getting myself in the Stand frame or Stand up chair, stretching myself out, and lying on my front ( very hard to do )
Now I know that all I’ve been doing is stressing my already swollen/infected spine.
I’ve had so many hospital visits these last 6 months, and this ( major ) problem has been missed every time.

Not really impressed. Good old NHS my arse – a private consultation proved very revealing.