So…
The blood test showed that I have a big style internal inflammation somewhere – more than likely an infection ( or other ) in my spine.

If I weren’t totally without sensation I’d be in excruciating pain all the time – the surgeon said – so there’s a good reason for the spasms! Obviously a ‘ normal ‘ person would be feeling pretty unwell too, and I am I imagine, but I don’t really know it…..

So it’s back to London Bridge hospital ( deja vue – back to August 2013 ) for an urgent admission and biopsy and all sorts of MRI typa stuff.
Then an operation, in all likelihood.

Ah, the joys.

With another UTI setting in, and a second sleepless night ahead, my spell of positivity looks proven to be premature.

It’s shocking to me how rapidly the worst thoughts return to haunt me.

I am powerless to stop the jumping and jerking of my legs, and paucity of sleep that leads to.

It leaves me angry and upset and wanting out.

I met Will.i.am yesterday.
Just by chance.

He said ‘ we’ve not met?’

I said ‘ Don’t you know who i am, Will?

I thought it was funny anyway.

I told Amber he was outside our house.
She immediately ran out to see if she could shoot him with her new waterpistol.

That’s my girl. 🙂

Perhaps about 7 years ago I met a man in my workplace. He was in a wheelchair. We spoke for quite a while. He appeared to have no use of both legs and little use of one arm, so I questioned him as to why that was – using my limited knowledge of paraplegia at the time.

He explained that he’d broken his back and was paralysed from tummy down, and had then taken up disabled water skiing. He got so into it that he soon achieved British team standard. I’m pretty sure he told me that to qualify for the next World Championships he had to achieve a certain jump distance. I stopped him there and said ‘ hang on, you’re paralysed and being pulled behind a speedboat, then you’re hitting a wooden jump at high speed, and then landing a jump well enough not to crash and kill yourself? I recall saying that I was fairly good at waterskiing (with full physical function ) yet would not even contemplate doing that..

He said that yes, that was pretty much it. I said that how on earth could he do that with only one arm? He started laughing and said that that was the reason he only had one good arm – that he’d landed a jump badly, the rope had become entangled in his grip, and that in the consequent crash, his arm had been pulled from its’ socket, tearing apart all the shoulder ligaments.

I recall being a combination of sad/shocked/impressed/humbled and all that week he was in my thoughts a lot.

When I turned up at the Sailabilty yesterday, after about 30 minutes, another man in a chair wheeled up. We shook hands and he did look familiar to me.

I tried the sailing and it went well I’d say ( no capsizes or near drowning, and we went around Queen Mary’s reservoir – a place I must have cycled straight past a thousand times on my bike ride to work and never once stopped for a look )
The volunteers were about as nice as they could be in every way, mostly gents over 65 just ‘paying a bit back’, I’d say

My co sailor explained that sailing was no longer in the Paralympics, but that the other paraplegic had been in the GB team.

I saw him again after they’d literally hoisted me from the boat in a big sling – I felt like an oversized baby stork – and he said to me ‘ did you used to work as an optician in Staines? I said yes, and I recall you so well, being just overwhelmed by what you’d told me that day.

Being a modest sort, he didn’t say a lot about that, but instead asked after me, saying that he hadn’t heard and how was I ?

I said that it hadn’t been easy and he looked at me and said ‘ mentally, I mean’

Again I said it had been difficult and his look of complete understanding said so much.

I hope that he and I become mates. I asked him if he’d help me with waterskiing and he wanted to know about trying snow skiing.

It’s now been 24 years since his injury.
He says he still gets really bad days.

I think he might be able to help me in more ways than just waterskiing.

Right, so whilst I appear not to have a tumour on my sacrum, I do have something wrong with a few discs, that may mean I have an infection within a part of my spine below my injury.
So more blood tests and if confirmed 3 months of strong antibiotics before anything else can be done surgically.

If I don’t have an infection, I need lots of imaging done of the area anyway.

So I’m in the dark for a bit, but hopefully not for long.
An infection could have led to my ongoing murderous spasms, so perhaps I may get some resolution there.

I’m understandably a bit tired of all this crap.

Thanks to anyone that has taken an interest in my welfare – I appreciate your support.

KNOCK KNOCK

Who’s there?

Done up

You can work out the rest.

I watched a programme last night about the Invictus Games team selection.

The Games are open to those that have served in the British armed forces, the whole idea having been spawned by the Ginger Prince.

There was a lady interviewed and featured in the programme that by pure chance I’d met about a month ago in France. She, like me, was on a sitski, but I chatted to her briefly in a ‘ mountain restaurant ‘ on the slopes.  She was very upbeat in every way about the skiing and showed no sign of paraplegia having mentally dented her enthusiasm for life.

What effect did that have on me? Did it inspire and encourage me?  Did it steel me and  drive me on?

No, it didn’t.  It did none of that actually. It made me feel a failure for not having progressed past this injury and embrace what there was in life still to have, as it seemed that she had. She gave no indication at all that SCI had adversely affected her at all. The guy with her said ‘ she’s amazing, she just gets on with it and never complains ‘

I saw her on her sitski an hour or so later and she was going pretty well.. not necessarily a lot better than me, but she was, I’d say,  smiling more than me.

What did help me was a part of the programme where I saw her interviewed and she spoke more honestly about the effects of her injury ( motorbike accident  ). She revealed that for 3 years she had barely left her bedroom, and had cried for most of each day of those 3 long years.

It’s not yet even been 3 years since my injury. It’s not much more than 2 years since I left hospital. In that time I have travelled all over the world, tried various risky sports, returned to work, and faced the world most days – in my new incarnation as a wheelchair inhabiter… So you could say I’m ahead of the curve. It hasn’t felt that way, as I’m still very reluctant to accept how it now is, but the evidence  I suppose speaks for itself.  I’m sure I’m not always a joy to be around, as I am still prone to moments/spells/periods of indescribable sadness during which I only think that death would have been better…. but those thoughts are not deliberate, not willed to be in my head, but come anyway ( and totally out of the blue very often ).  I do get less of them of late, and they last less time. I’ve realised too that I’ve started to re-appreciate things  – sunny days, funny moments for example.  I found myself laughing out loud yesterday at something, and I realised that I hadn’t done that for perhaps 3 years.

So there is progress.

Thanks to the very kind Jo Wright for her time recently, to Debs for last night, to two of my students for their company, to Mike and Teresa Smith for Saturday, and to Clare in advance for tomorrow ( where I try sailing…). Not renowned for my luck in boats of late, so who knows what’ll happen…

Despite my best efforts to ignore them ( impossible ) my spasms continue unabated. Last night they were non stop through the night too, obviously limiting my sleep.

I try to tire myself out each day to increase my likelihood of sleep. Every day, but one. for the last 2 weeks , I’ve done up to 2 hours arm biking on a stationary trainer, which does exhaust me. My legs jerk throughout my time on the bike, despite being strapped down tightly to metal parts of the trainer. I have to try very, very hard to arm pedal through the mental distress, normally trying to take my mind elsewhere and having the radio on very loudly.

The result is that I’m definitely fitter, a bit tanned from being outside too, but overall possibly spasming more of the time than before.

I can’t really win, can I ?

Changing the subject, I’m very glad that the families of the Hillsborough football disaster have finally recieved some justice. I was 22 when it happened , and at the time probably most of the dead were older than me. Today I looked at the pictures of those same dead and they were definitely all younger than the age I am now, some far younger. Their youth makes the disaster seem even more awful than it was already.

Again I find myself in tears.

Actually, on reflection, I can’t wait 4 months, not now I know there’s a glimmer of hope of improvement ahead.

It’ll be possible to get this done in the near future ( unless the medics actually decide it’s not a good idea after all ) so I’ll go for the earliest date that is offered to me and opt to miss out on anything else that I had in mind.