After a long day yesterday, I ended up still wide awake at 3.30 am, before sudden sleep forced its way upon me.

That seems to be the way that it is now- I’m wide awake and then suddenly  my eyes are shutting and I fall asleep mid email.

I woke at 5am,  my phone in my hand still, my legs spasming for, as usual, a reason that I didn’t know about, but requiring me to press the button that calls the nurse. I asked her to move my legs for me, and to put a blanket over me.

I was completely awake once more until perhaps 6.30 am, and then tried breathing ‘ exercises ‘ that a friend had recommended to me, where you do nothing other than think about your breathing.  I think that within half a dozen breaths I was asleep, to wake at 11.45 am, at which point a lovely Irish lady from a care agency arrived to discuss my ‘ care in the community ‘ going forward.

There is so much confusion as to whether the NHS district nurses will or won’t be available to contribute to my needs. It seems almost scandalous that they can refuse to help someone in need, like myself, but it’s what I was being told.

I phoned my GP practice of 20 years to speak to my doctor, to be told by his secretary that I had actually been referred to the district nurse service, and that this was in hand, completely contrary to what I’d just been told by the physiotherapist / OT,  here in the hospital.

As I’m leaving here in 3 days and am still in the dark about how the hell I’m going to manage, it’s all becoming lastminutenursing.com, with me in danger of being bed bound and Incontinent… with no help.

Watch this space to see how this bedpan’s out.

Great to see Pistol Pete, one of the Toulon Twelve, plus Foghorn Frankum too. Two very interesting chats, but for very different reasons, and with very different views on my immediate future.

The reality is that I cannot give up now, after coming this far, and will have to both fight for what I need, along with sucking up the bad bits, as usual.

If anybody wants to visit me, and has a hammer and a set of metric Allen Keys,  and a modicum of spanner know-how, please come asap. My wheelchair brakes need adjusting, I know exactly how to do it, but I can’t  reach myself. It’s currently unsafe, but the hospital staff are reluctant to get too involved in case I sue them for doing something that ends up with me having a wheelchair crash…. such is the reality of modern health and safety.

‘Dear, oh dear’ , as my Granny used to say ‘ what’s the world coming to?’

Quite.

PS No nightmare for 2 nights in a row.

PPS Happy bday to my nephew, Ben

. Money sent with instruction, ‘ not to be spent on porn ‘

No idea if he’ll listen to my advice.

Thank you to my lovely daughter,  Lily, for visiting her Dad, and to Nick Sparey, my cycling buddy for coming too.

I know quite a few people with very busy lives,  who have proper jobs,  and I do appreciate them taking time out of their already full lives, to fit me in, I really do.

I promise to come up once a month and take you out for a pub lunch, even if it means I have to get you out of bed.
I’m sure I saw it all before at your 18th birthday party, anyway. That toga was REALLY small!

I can’t remember, Lisa…. they took no mercy and I was sick about 5 times…

1. Well in ( recent ) time honoured fashion, I’ve bounced back today. I woke up feeling very down, and drowsy, my blood pressure was at an all time low ( 90/50 ) and I kept falling asleep ( despite no sleeping tablet.

After that, I got a 2 person help into my standing up chair and then shortly after that 2 lovely visitors arrived.

Roxanne ( no red light ) and I won the mixed category in the 125 mile non stop DW canoe race, a few years ago, and Alison had been my Chief of support crew, in the same race about 6 times.

Ali has a  very complicated ocular status, and so I’ve been able to ‘ pay back ‘ her dedicated support for me, in ocular services and advice over quite a few years. I hope she doesn’t mind me disclosing that. And I must stress that Ali has tried very hard to pay me, monetarily, but without success.

In that race, where you need to drink a litre an hour of water/ energy drink  you  have no time to keep stopping for a pee, it being a time trial race ( and the Everest of canoe races ) so that means that you have to pee yourself in the boat ( which you empty out as you run with the boat over the 77 locks on the canal/ Thames course )  That means that you do end up inevitably being drenched in each other’s  pee, though diluted with river water   All that may sound unpalatable, but that depends how squeamish you are.

Now that my bladder drains into a leg bag attached to my leg/ up my sweatshirt, it means I have to turn the tap and drain the pee into any available bottle ( wine bottle yesterday )   Tipping that bottle over the edge of the South Embankment wall into the Thames wasn’t  a problem for the girls, and actually quite a nostalgic thing to be doing?! Passers – by would not for a second think the pretty clear fluid was urine, so all quite funny really….

It was lovely to see them both, and hope there’ll be a repeat very soon.

Then I saw the lovely and balding ( in that order ) Cressida and Toby, who are always brilliant and sensitive ( in that order ? ) company.

I also get to see a lovely lady called Whizz, who I’ve not seen for 20 years, in a few minutes, and I’m looking forward to seeing her very much. ( photo above )   No excuse for not having seen her for that long, and it definitely won’t be another 25 years til the next time ( or it’ll be too late, as I imagine I’ll be  dead if something by then )

I seem suddenly, after 3 years, to have regained an appetite for food, which is a worry, having remained ‘slim’ since my injury.

Willpower though, I do have in abundance.

I have quite a lot of nightmares about ‘ things that move in the night’  – you know, like when you’re a kid, and the evil thing is creeping around the room.

In my dreams, it’s lurking close to me, waiting to get me, and I’m paralysed and can do little about it. Just now, in my dream, I was able to punch out at this thing breathing next to me. I woke up to find the glass on the table knocked off and  my sheets all wet.

I couldn’t of course feel the sheets were wet until I felt down with my hands to try to move my legs which were spasming because they were soaked in cold water.

I can press the call bell here to alert the nurse to come and change the sheet.   How I will fare in the same situation, having been moved to Chiswick, is a whole different thing.

Yes, I can wait til the carers arrive 8 hours later, I suppose.

So…. all change, all of a sudden.

‘ Rehab’ / medical help has been postponed for 3-4 months, on the basis that my fixations are too fragile to test in an environment where I’d be, by definition, encouraged to test them by trying to move.

Now it’s become a ‘ get me back to Chiswick ASAP ‘ exercise, with  a package of care from NHS or private funding ( 2 people )  that includes getting me dressed/ out of bed at a time of their availability /  into the wheelchair/ cleaned/ ‘ internally emptied ‘ /  helped back into bed, at a time of their availabity ( 7/8 pm ) , for the next 3/4 months until my screws have properly set into my spine.

I cant  transfer, by myself ( not that I can anyway now, such is the rigidity of my fixation  )  into a car or normal taxi, let alone drive myself, as I have been doing for 2 and a half years.

I face a life spent in bed, more often than out of it, totally dependent on ‘carers’ and the obligation/ charity of others.

I came here with spasms,  I leave here robbed of so much of what I had left.  That wasn’t the plan. And I still have spasms!

Do I sue for damages?  If  I ‘ win ‘,  what does money buy me?  I’ve never cared about money in any way at all – I was the same level of happiness when I was a poor student,  as when I was ‘ successful ‘

I’ve experienced a massive revival over the last 5 weeks, where I’ve felt happiness again, as I never thought I would. My light was switched back on.

Now I feel it flickering again.

If it goes out, then I fear that it can’t be reversed – not this time.

Thanks to Ed, my visitor today, when I thought I wouldn’t see another familiar face.  Friends since Cardiff Uni, he still looks like he’s 15, just wearing more expensive shirts.

Though sh******g myself is an inevitability.

Gravity is a powerful thing..

Impressive u in touch with so many from school!

If I was u I’d have 1 visitor a week! That doesn’t make me sad – we’re just different personalities I’m not right or wrong nor are u – just I’m more introverted than u!

( from a fella that’s most certainly NOT an introvert )

I think I’ve been in this hospital too long.

Its come to the point where certain members of staff ( who’ve neither been paraplegic, nor had a background in extreme physical fitness nor an understanding of real ‘ core conditioning ‘ , nor are are particularly logical,  but are bound by hospital red tape ) are not  prepared to listen to someone who has  well thought out input in all of the above, having lived for many years in these environments, and whose fixation has already broken twice whilst here, and really can’t afford for it to happen again, having been rendered far more disabled than when he arrived here 8 weeks ago…..

Some folks really don’t like being ‘ challenged’  in areas where they are very protective of their ‘ authority ‘ .

Thats the same the world over though

I’m certainly ready to move to a more specialist , and more knowledgeable environment.

Just waiting for that  bed/ space to be available.