And another bad night of spasms.
Blimey I dread lying down/ going to bed.

I went to thé theatre with Gina because it’s her birthday soon, and I spasmed all through that too.

Christ it’s hard to focus on anything else when your legs are jerking.

Then on leaving it was pissing rain so I got soaked through on the way back.
No help meant that was very hard to deal with.
All in all not a positive night.

Still a lot of sediment in my pee
😢

Life has been so dire these last 6 weeks.
Every time there’s been a glimmer of light, a torrential storm has immediately gathered and not so much rained on my parade but swept all the people in it into shark infested pool where they get slowly eaten alive.

Suicide has been so fing close it’s crazy.

When it’s like that I can’t help but want last contact with my daughters ( more than anyone else ). It’s just how it is. I want to say goodbye to just those 2 people.

When the sun comes out again just a little ( as it again has via antibiotics and 7 hours sleep ) then I realise how pointless that last wish actually is.
Why would I crave contact with people who are indifferent to what happens to me? Illogical, right? Or at least if I want some last solace in some way then I’ll definitely die unfulfilled.

So, logical me is born again from the brink.

The urologist I’d picked at total random to see yesterday just miraculously happened to be Julian Shah. He ran / headed the urology department at Stanmore Hospital for the paralysed for 30 years.
There’s no one on this earth more qualified in knowing what to do to help me.
Finally someone that will actually help. You see I know what treatment I need, more or less, but as he said, finding medics that will actually do what is necessary to help my very specialist condition is virtually impossible.
I currently have to verbally argue with my GP to get antibiotics. He gives me every reason under the sun to not give me the drugs to treat me. It’s insane. He is so obsessed by caution and spurious side effects that he’d rather I go without ( have a uti and die at my own hand ) than just supply the medication.

Mr Shah is going to write a long letter and put this situation right. From now on the right things should happen.

Thank F for that.

This morning I had the most disastrous of ‘bathroom calamities’. I literally couldn’t believe what happened. By myself and with no help available to assist.
I don’t know how I managed to clean it up, by myself. I amaze myself with what I can do with one hand and a metal grabber in terms of cleaning up a bathroom equivalent of a mass murder in a small room.

And the UTI…

Came back.

2 hours sleep again.
Jeez.

There is good/ better news but I’m too tired to write it now.

For the first time in a long time I slept.
This wasn’t because my spasms had stopped- they are awful, but Gina and I figured out a position to get my legs into where I could feel the jerks less.
Combined with total exhaustion it meant I slept for 9 hours.

I’ve been on the cusp of suicide for a while now.
Changed Will, written letters, knife at the ready.

Who knows what’ll happen.
I don’t.

Yesterday, at the end of my bloody tether, I had with absolute conviction decided to end it all.
In the process of getting my affairs in order I realised that I needed more time to do it.
Although my affairs are in order, pretty much, it was taking quite a lot of time to tie up the loose ends.
F it, I’d have to delay ending it by a day.
Then I had the prospect of another night of torment and no sleep.
I actually dread going to bed now because I know that I’m going to lie there and spasm all bloody night and not sleep. It’s worse than being sat in a chair with jerking legs because when you are horizontal the legs have a lot more room
to express themselves..,
Also I was so bloody tired yesterday I found doing admin stuff really hard.

Now it depends on tonight how I’ll feel tomorrow.
Who knows.

I have arranged to see a urologist though ( possibly a positive ) and my GP is testing my urine. I mean the antibiotic surely isn’t doing what it’s supposed to be doing.
It’s very hard to tell though.
I a getting lots of uti symptoms but not all of them.
And I can’t feel my lower back or lower abdomen to tell.
All a headf***.

Well after a really long 3 hours sleep last night.. I decided I had to do something positive to get out of the hole..

So I went to the Natural History museum and about to go into KOKO in Camden to see a gig.
The last 2 nights I had tx for I had to abandon through adversity.

But like I say, with 3 hours sleep under my belt I feel up for it.
Sure I still have a UTI and I’m still spasming all over the place.
So do I do that at home by myself, or do I go out and do it?

Answer above.

It would seem that some people get a chronic UTI.
It’s where the bacteria have penetrated the bladder wall and won’t die.
The only solution is long term antibiotics, and hope it will eventually go.

Yes, I have an active infection.
Jeez it’s killing me, the lack of sleep.
Repeatedly I’m awake all night, and I dread going to bed. The spasms start and then they continue all night long. Sleep is impossible.

And I get home and get a UTI.

ZERO sleep last night.

Not sure how much more I can take tbh.

As above .. having booked flights to Portugal, in order to meet my builder who is installing ceiling hoists in my ickle place here.
Well it’s bloody hard to do anything without hoists, so rigid are my legs/ so full am I of metal.

But I got another UTI once here. FFS! Thankfully I have a course of antibiotics to address it.
But as per usual shite, I can’t sleep with my legs jerking. Just impossible.

So not so straightforward then, but then again it never is.
Sleeping through the night is a decade old memory for me. Waking / being woken by my body 10 times a night is quite usual.
I just have to hope I go back to sleep.
Usually I do. Not last night.

Anyway it’s bloody hot here mid October. At least there’s the weather.

Me and Gina G to help me, bless her cotton socks.
She’s a starship trooper for sure.

Rugby watching on my phone.
TVMucho is the app. And it works. Was £5 for a week.
We did go to a sports bar to see Wales get knocked out ( no surprises ) except the commentary is all in Portuguese – not so good that.

Got a friend who has had a crap life. I know how that feels. Not my first 40 odd years but the last 10.
Here’s the dilemma – is it better to see a ‘ therapist’ and talk about how crap my life is and what I’ve lost via my accident… every week for 3 hours, with the in between times spent thinking about what I’ll say to the therapist next time, so that effectively all I think about is what I’ve lost blah blah blah, or is it better to just not think about the better times and just how much I’ve lost at all ( or as little as possible by just shutting it out of my head )

So be miserable all the time, or just look for the joy in life now?
Good to talk? Or best not to talk?

Well I know what’s best for me. Thought it took an awful long time to manage it.

All those poor buggers who came back from the trenches/ the jungles/ the deserts, in the WORLD WARS… did they talk about it all the time? Seeing all the death and misery .. or was it something they just didn’t talk about and were then able to appreciate not having died themselves ..

What happened to the Stiff Upper Lip?

Never have people in the UK been more unhappy. Most teenagers are still depressed about the pandemic… hmmm I don’t know, but they could have had it far worse, had they been born 130 / 80 odd years ago and had to join the army and see the horrors of War.

What do you think about that then?
Talk all the time about how awful it was, or move on and try to put it in a closed box in your mind?

I’m out of hospital now for a week.
I’m definitely not ‘ fine’ but am far better than I was.

Last night my bloody legs woke me at 2.45am and then spasmed constantly until Gina came at 7.
Obviously I was awake for all that.
I don’t think I have a UTI at all now, yet my challenges don’t seem to recede that much.
I do feel a bit cursed atm.

If I wasn’t by nature glass half full, then I’d have definitely ‘ checked myself out ‘ this last 2 weeks, such has been the horror of it all.

I don’t think too much about my daughters these days, but bloody hell they are 2 bloody callous young women, not to get in touch recently.

Their mother has clearly done a fantastic job of bringing them up. …albeit with extremely different values to the ones I’d have engendered in them, had it been my ex wife that had ended up in a wheelchair.