And I seem to have gone backwards again. Spasms bad all day and night, and little sleep last night

🤷😢

Finally.
Solutions/treatment/good ( the correct ) advice.

My infection has gone. Possibly it had actually gone a bit ago. Really hard to say.
My bloody spasms have diminished by doing a few things at the right times of the day.
Principally the new medication that stops the internal spasms of my poor bladder ( which has been through the mill ). When that spasms ( mostly because of the presence of a ( foreign body ) catheter poking into it, my legs also spasm. Also any trapped gas inside me causes spasms. I can’t tell what the cause is specifically, but I have to always/ every day address the possibility ( probability ) of it happening.
I’m now on a medication that stops my bladder being so sensitive, and also something called Hiprex which makes your bladder contents more acidic ( especially when taken with a horse sized Vitamin C supplement. The Vit C further makes your pee inside more acidic. In that internal environment bacteria can’t multiply so die.
The jury seems out on whether it kills a UTI but it seems in most people to make it unlikely that you’ll get one In the first place. I had been told you couldn’t take it til any UTI was gone, and I thought mine hadn’t. Now I’m not anywhere near as certain. It may have gone a bit ago but my symptoms persisted so I thought it hadn’t.
Last night I had more than 9 hours sleep. Not right through but kinda close.
Nine plus hours is more in total than I’ve been getting in 3/4 nights, so it’s transformational.
I had another test ( called Urodynamics ) yesterday which measured bladder function more accurately. It’s all information for Mr Shah, my urologist, whom I’m wish I met a long time ago.

I have been at rock bottom for such a long time but I am not now.
Thanks to my family and friends that have supported me in the darkness.
I’ve not been able to ‘live ‘ at all for 2 months but now everything seems far less shite.

I’m definitely not going to ever be complacent about medication taking or strategies to prevent recurrence.

And another awful night.
Slept from 2.45 til 3.45. That was it.

My antibiotic obviously isn’t the right one for my infection.

More tests tomorrow.
God I hope I sleep a bit tonight. I’m like a zombie.

It goes on. I had 2 hours sleep again.
My wee has a lot of floating filaments in it.
That’s UTI territory.
I’m taking the antibiotics still and thinking it’s come back.
I don’t know what to do.
I’ve emailed the urologist and he’s on holiday.
I get to talk to him on Monday I hope.

I’m in despair again.

The gig was brilliant.
A positive force in Camden Electric Ballroom
If Eve is reading this, I’d so love to hear from you.

Yet again a Bad night of spasms , tho I did get 5 hours sleep. My spasms have Changed. They are hard to interpret. It’s a code without an obvious solution. Certain spasms mean certain things you get to realise, but you may get a spasm that goes on for hours before the ‘reason’ occurs.
It’s very depressing for sure.

And I’m getting nightmares featuring my two daughters still. They are the ages they were at the time of my injury. They are angry and shouting at me. It’s very distressing. I don’t usually have dreams so this is new.

I’m in a hole for sure, that I’ve been in for 6 weeks pretty much.
I have some lovely friends that have been there along the way. Their presence helps to ease the pain but definitely doesn’t make it go away. Thank you to Leigh and Bev, to Chris, to Charlie, to Kerry too. And to my Mum who is always trying her utmost, and to my brother Stu. It’s good to know I still have family. And of course to Gina.

Jesus I try. It’s not like I just give up. Tonight I’ve gone to a gig. By myself. I’m cold, it’s wet and it’s in North London. I know that if I don’t go and use my ticket(s) I’ll consider myself having failed, so I do go, despite my thoughts saying ‘ what’s the fing point?’
The Pigeon Detectives are always quite something and maybe they’ll lift me. I hope So. I need sleep and no nightmares.

Well it came back.
Unbelievably I forgot to take my antibiotics on Saturday and the remaining bacteria 🦠 clearly made a rapid comeback.
I realised I had created a perfect storm.
No antibiotics and a whole flask of Marmite drink when I went to the Brentford Vs West Ham game. I felt fine ( ish ) on Saturday but the night was really bad, with awful spasms and only an hour of sleep ( 12.30-1.30 am ).

Marmite is Brewer’s yeast, it turned out. That’s the perfect soup for bacteria to multiply in… which they clearly did very well.

Ffs, what a stupid error. I mean I just didn’t know of course I’d done anything wrong. I was just so pleased I didn’t feel awful that I let a bit of joy into my life and eased off my focus.

Well just so you know then. If you have a UTI or anything infection problem in your urinâry system… DON’T DRINK MARMITE!

On Sunday ( yesterday ) I took double dose ( possibly triple ) antibiotics and actually slept last night. Broken sleep, but sleep.

I’m now doing everything by the book
No sugar, no alcohol, my antibiotics , loads of water and no bloody Marmite.

Christ.
At last I slept and didn’t spasm ( to my knowledge ).
Eight hours.

What a difference it makes.
A week more of antibiotics and no alcohol for me.

Gotta put this behind me, and I hope it does that.

🙏

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.