Two nights in a row of SIX HOURS sleep.
For me that’s like sleeping for a week.
And I feel a lot better for it.

Spasms way, way down on their record high.

Now back to dealing with my scurrilous ex wife and her post divorce financial demands on me.

If there was a God then he would surely strike that woman down.

Other than that (!) I get a new triride ( finally ) next week and then my life can get back on track once again.

The last few weeks have been dire, and I don’t use that word lightly.

Once more unto the Breach then. ..

Thanks to all those who have been very supportive through this time ❤️

Having a UTI is like having a screaming baby.
The ‘ baby ‘ is your spasming leg. For me it’s my right leg and the muscle that spasms is in my right shin. That’s the one that pulls your toes up to your knee.
It fires repeatedly. Sometimes every few seconds, sometimes like gunfire. That muscle spasm tho is so violent it doesn’t just pull my toes up, it moves my whole leg, sometimes as in my leg lifts up and crashes down again.
Lying down it’s most noticeable. It lifts off the bed and crashes down again, repeatedly.
If I grab my foot, my hand isn’t anywhere strong enough to stop the spasm going completely. The spasm is far stronger than my grip. And my grip strength is pretty good to say the least.

Like a Baby the leg can be calmed by rocking it, stroking it, moving it.
The moment I stop, like an hysterical baby, within a few seconds it fires again. Like a baby at full scream, it violently spasms. And again, and again, until I calm it ( to a degree ).
At 4 am, after say 5 hours of doing that, when I’m extremely tired/ pissed off/ desperately wanting sleep, after nights of the same pattern, all night long, yes I’m desperate for the ‘ baby ‘ to stop. That’s the moment sometimes even the most devoted parents can even harm the child.

I just want my fing leg cut off. I resent it and despise it. The leg is no use to me at all, yet is now responsible for tormenting me.

Last night I did sleep briefly. I woke confused. I’d been a soldier and I kept being given a target to achieve. I think I was a captive and was being told that if I did this thing successfully I’d be set free. I’d complete the near impossible task and be near release, and then I’d be told to complete something else almost impossible and if I did I’d be released. I’d do the task, then be told again to do something else.

The dream was a metaphor for my life. If I have this operation I’ll achieve an improvement. I had the operation, got to ‘ my target expecting release’ and then I realise no, it was a false hope and in fact the target wasn’t the cure for the symptom, it was a target that actually was a fruitless false hope that in fact had made no difference, just given me optimism for something that actually isn’t going to help me.

I woke in despair. The operation had in fact made my spasms far worse than before, and not better as I had been convinced it would.

Well thank God I now realise that these particular spasms were down to a UTI, rather than a ‘ botched operation that actually made everything worse’.

I couldn’t live much longer in this kind of repeating nightmare, desperately tired yet dreading lying down ( when the spasms would get far far worse )

That’s how it’s been for 5 nights in a row.
I’m hoping tonight I get to sleep….

I havé a severe UTI.

It dawned on me last night, in the chaos of severe spasming and terrible sleep deprivation that it could be that.
I always have a drug course in case I do, and I started that at 3am
Last night was dire but I think now that the worst is almost certainly behind me.

I’m leaving this evening.
Despite this place giving me the horrors, I would stay longer if I had to, but I’d hate every second of it.

The blockage is cleared and my insides are functioning.

I’ve had no triride whilst hère so any forays outside have involved being pushed. God I am so uncomfortable mentally With it.
I’ve not had to be pushed for such a long time.

I’ve such drastic metalwork and am so FIXED that self propulsion is virtually impossible for me unless I’m on a smooth, totally level surface.

Around here is far from that.

Thanks to Gina and to Shanta for pushing me. I’ve hardly been cheerful I have to say.

My triride didn’t fit into Gina’s car when she brought me in at 2am on Wednesday. Bless her, she’d not driven into London for 40 years… she said… despite living just outside it.

It’s not like she’s even a poor driver. She’s actually very good. I navigated and she drove. Was easy.
Obviously she had eventually to take her car back, which she did a few days later, and drove at a peak traffic time.. again no problem.
If she leaves it another 40 years, she’ll be dead.
I’ll bet death comes first and driving in again never happens.
She’s happy so that’s cool.

The plumbing in this room is really dodgy. It makes noises like furniture being dragged across the floor. Every 20 seconds or so it sounds that way.
If it was in your home you’d never tolerate it. In a hotel, you’d leave.
I couldn’t do that. Stuck for days.
I was transferred from a different room. That was because the TV didn’t work at all. I swapped no TV for a serious plumbing issue. I didn’t expect either in a ‘ posh hospital’
In this room there’s a seriously fancy ceiling hoist. They don’t use it. Not serviced of late they said. I don’t think that’s the real reason tho. The staff have clearly never used it? Bizarre. It’s the kind of kit most paralysed people would die for. Here… not even used. Instead they grapple with a Mobile hoist. Like wheeling in a crane into a small room.
There’s no logic to so much that goes on here.
I live by logical process and the absence of it I find actually disturbing.
I bet if i came back to this room in a year nothing will have changed. I just get that impression of this place – layer upon layer of administration rather than anyone fixing anything. 🤦‍♂️ Good grief.

In hospital, nearly anything at all that I want done, I have to ask someone.
At home I can pretty much do most things myself, somehow or other.

The loss of independence I have here is a truly shocking reminder of just how buggered I am when put into a bed and left.

It’s really sobering.

Finally.. unblocked? Hard to be sure.

As I’ve not eaten for a week my arms are about half the size they were last week.

Christ almighty I look like I did 10 years ago here – emaciated with huge loss of muscle mass.

🤦‍♂️

Christ I am now so hacked off with this situation. It’s an interminable waiting game for my bowel tract to unblock. If it doesn’t then it’s surgery again.
Me and this hospital have a long association.
None of it is positive.

It was the place I was flown to from Toulon in 2013. It’s where I was first put in a wheelchair.
I was In intensive care back then and my life had changed for ever In every way.

I get that painful flashback again and again. Being here is like being trapped in a nightmare.
I wouldn’t be surprised if today is the anniversary of my first ever trip outside in a wheelchair.
I did exactly that today and it was a full on PTSD type mental experience.
I so want it to be over.
This place sucks the life out of me, it really does.

Back in hospital at 2am on Friday, after leaving here on Wednesday.
I was repeatedly blocked up, and yesterday to an extreme degree.
Everything I swallowed I vomited back up with extra and I therefore got progressively more dehydrated. God I felt like shite. Truly.

I waz throwing up this green coloured fluid by the end. I don’t even know what it was, because it didn’t even taste like sick.

I’m now in hospital with this disgusting tube up my nose. Christ it’s uncomfortable, up you’re not se and down your throat. It sucks vomit from your stomach. It’s like some medieval torture and it’s been in for 3 hours.
Like I needed to be tortured after a fairly unpleasant week.

I came home yesterday.
I figured my own environment was going to be better adapted ( literally) for me than the hospital ( which was true ).

Tube and road for the Buddha in the wheelchair.
Gina followed me in a bus ( other than being with me on the Tube).

I was still MASSIVELY BLOATED- it’s not a great look tbh – but I knew it would be finite.
One high point was suddenly feeling sick 🤢.
Not been sick for about 8 years, and it’s not like I can rush to the loo or even lean over the bath or any of those types of things.
I grabbed a plastic bag just in time .. before chucking up 3 times.
I had to then wheelchair to the loo using one hand at a time, around several corners, swapping the full bag from hand to hand…
And spilling some…

I then had to avoid wheeling through the sick. Well once it’s on your wheels it goes wherever you go.
Bit of a nightmare then at a time I felt pretty low anyway.
Anyway I managed to sort it out, going back with disinfectant wipes and a long handled grabber to clean the floor.

I’d felt beyond sleepy prior to that .. but it’s amazing how awake that situation made me… 🤷💦💦💦

I had to wait a few hours for Gina to get back and she stayed here last night too.
Yes she had to be asked to help me several times, predictably ,
so just the biggest thanks to Gina for the last 5 days.
Overnight about 3 litres of urine came out of me as well as the other stuff 💩. At last progress has been made!
Different rules apply to me with ‘ bowel management post op ‘. I need a 💩 load more laxatives etc than a normal body would, or else I stay like a Buddha who owns a cake shop.

So I’m getting there!
Still bloody painful tho.

Thanks to Roy, Russ, Chris and Toby for being visitors. I was so sleepy throughout , I was nodding off continuously.
They aren’t boring guys! Honest! It was me and my drugs interacting.

I’m going to have to take it easy these next few days ( think the hospital said next few months ) but that’s not going to happen. Too much to do!

Stomach far flatter than yesterday but hardly Kat e Moss just yet.
Yesterday I thought my stitches were going to burst under the pressure, but they didn’t!

And Wales thrashing Australia was a tonic tbh. Can’t recall watching that happen EVER before.

Spasms definitely less too. That was the objective and so far it’s working.
Early days tho!

Having abdominal surgery makes you bloat.
Lying down makes your lungs fill with phlegm.

Then you want to cough up the phlegm.
Except when you cough that stresses the stitches in your stomach.

Talk about being stuck between a rock and a hard place. Desperate to cough up the crap in your lungs but every cough hurts like hell. Like being stabbed in the stomach.

Also just a case of having to wait for the gas to come out… aided so far by 3 packets of sugar free polos.
Normally that would give me drastic diarrhoea but no sign of that happening. Just a blessed signing fart every now and again.

🙏