Monthly Archives: November 2023

Nearly December.

Four hours sleep is far better than one hour.
Just can’t seem to exceed 4. I wake up at 4 am or so and that’s it.
Sure, I’m spasming away still, not as badly as before ( well some of the time it is really bad ) but I ought to sleep through it as I’m blimmin tired… but I don’t. Weird.

Grimsky, innit.

I can’t bloody go online dating when I’m in this mess, and single life is a bit lacking.
I’m not good at being single!


Well now I’m on 2 drugs. One is to target bladder sensitivity and spasms.
The other is a general antispasmodic.

Thus far it’s made a lot of difference ( tho at this very moment my right leg is VERY jerky)

I’ve been getting 5 hours a night sleep for 3nights. That’s with a powerful sleeping tablet on top of the antispasmodics, so it’s not like I’m out of the woods..
but it’s better.
I’ve managed to get out and not be so bloody tired that I can’t function once there.
Thanks to Leigh and Bev for Richmond Theatre and Gina came to watch Brentford lose to Arsenal. Beyond that I’ve done very little, which is not how I try to live my life..

Just stop

My right leg jerked hard ( a sequence of around 10 hard jerks ) every 20 seconds, from 11am until 11pm. At 11pm it just stopped. Why? No idea.
I did sleep. I had 5 hours.

At 8.30am today my right leg started again. Same spasm sequence.
I live In fear and dread of my spasms. They are so mentally debilitating.
I can’t function anymore.
I’m taking medications, supplements, doing everything I can think of to stop it happening, but nothing stops it.

Life is intolerable.

Groundhog Day

Whilst I have had sleep, my days are Groundhog Day.
I spasm pretty much all day long, every day, with the odd period when they stop. The jerks are hard and it’s impossible to think about anything else.
Mercifully the last 3 nights have been ok. I don’t know why / how.

Today all day it’s been just awful. To say I’m falling apart would be an understatement.


My urologist told me to get home uti dipstick tests.
I did and on day 3 of my antibiotics the markers are still maximum ( nitrates and leucocytes ).

I slept well ( for me ) last night however, so that’s a positive
For once my legs in bed were calmer than they are once in my wheelchair.
Hard to understand what’s going on, isn’t it?
Awaiting the GP urine analysis tests still.
Often they come back as negative? If the home one is crazy positive, it’s hard to understand how the proper one can be negative?! Anyway let’s see.


For sure I have a uti.
My symptoms absolutely scream uti.
I’ve started antibiotics again.
They may be ineffective, I don’t know.
I’m awaiting a specimen result but I do know my symptoms.
This infection has come and gone in severity but it’s definitely present in my system.

I slept 7 hours, no doubt through the spasms. I woke at 4am with a jerking right leg.
The left has joined in.
Sleep was a life reprieve. Had I not slept again – well you know what I’m saying.
It’s how my life is.
Like someone is pulling strings – let’s give the bloke a few hours sleep, so we can then keep him alive long enough to torment him for the next 4 days and nights..


And another 2 hour sleep night.
Spasming swaps seamlessly from one leg to the other.
I get one leg into some weird position and it stops jerking. Immediately the other takes over, spasming with the ferocity of the first.
It’s psychologically a head f***.
I dont havé any solutions for this any more. I have never had this extreme version of spasms. It’s far worse than anything before.
I don’t think I’ve a UTI because when I get those I certainly know it mentally. My personality alters to a worse version of myself.

Now I’m just bloody tired, have no appetite and dread going to bed. I have revisited going to sleep with my head on pillows on a table and that works if the spasms have stopped. If they haven’t I just get thrown around my chair and it’s not possible to sleep.
I tried it today. Gina helped me ( got me ) out of bed at 5AM and I tried sleeping head to table.
Spasms so strong I had no chance of sleeping.
She spends more and more nights here.
She’s a marvel and I’m so glad I have her.


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.