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.

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….