Despite doing quite a lot.. I just can’t sleep.

A gig on Saturday.. Leftfield
Christmas Theatre at the Old Vic on Friday
Football and then Dick Whittington yesterday.

Still I get 3 hours, sometimes 4 of sleep.
I’m exercising as well.

Bloody hell im tired.
My legs, although bloody stiff and unbending aren’t spasming anywhere near as much, but I wake and cannot sleep again.
It’s bizarre.

My legs are even more rigid than before.
Baclofen, the antispasmodic drug, possibly makes me worse. Hard to fathom but I’ll come off it and see.
Hospital today for Botox injections inside my bladder.
I spend All of my time trying to suppress and deal with my leg rigidity and my medical appointments, yet thus far there hasn’t been improvements of real significance.
That makes me very unusual in the paralysis world.

Jesus.

At least some distraction this week. Tried to stack my diary with stuff to bloody do.

Well a more consistent sleep pattern now. Four hours, sometimes more. That’s enough to survive on.

At least it enables me to function a bit.

Now as though things aren’t already a little problematic… I’ve now got 2 very dodgy looking moles appeared that need urgent inspection… so waiting for that.
Also I now have a strange persistent cough and a weird taste when I do. Hmmm , what can I say.

Aside from that life is a little better. I still don’t understand football but I’m still going to Brentford today to watch them vs the ( kinda ) illustrious Luton. Theoretically we ought win.
My social life is limited, dictated by spasms and whatever is happening in my ‘ insides’. Thats a euphemism for the unsavoury things.

Friends have been very helpful recently, I have to say, and I’m very glad I have them.
Gina has been a superstar of course, having spent far more time with me than ever before, and big love to my mum and dad. They have been awesome tbh.

And a special mention to my friend Ali.
X

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..

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.

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.
FOR SURE.

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.