Category Archives: Events

But Amsterdam was good!

One of the conversations I’ve only been having since I’ve been in a wheelchair.

Hello, it’s Eurostar calling. You booked assistance to get onto the train at Amsterdam later today.

Me- Hi yes, I did.

Them- We have a problem. The elevator isn’t working at Amsterdam Central so we need you to go to Rotterdam to board your train, because the lifts there are working fine.

Me – Ok, and how do I get to Rotterdam?

Them – On a Eurostar train

Me- From where?

Them – Amsterdam Central

Me- How can I do that if the lifts aren’t working?

Them- that’s why we are asking you to go to Rotterdam

Me- but how do I get to Rotterdam?

Them ( again ) – on a Eurostar train.

Me- but how can I catch a train from Amsterdam Central in my wheelchair if the lifts aren’t working?

Them – You catch a Eurostar Red train going to Paris.

Now it’s pretty clear to me ( and bear in mind this is passenger assistance calling a fella in a wheelchair ) that’s it’s not abundantly clear how I can get onto a train in Amsterdam when the lift isn’t working.

What i want the assistance person to explain to me is how the new plan is going to work. If the lift to the Paris train is a different lift, and that one is working, and this is a workaround then tell me maybe, because it’s not 100% obvious.

I’m told to go to the station an hour earlier than before.
I duly do, in fact 90 minutes before.
When we get there, there is total confusion ( as expected ). Staff don’t know about the lift status. Lots of them look confused and some take to their phones. Lots of ‘ checking ‘ seems to be going on.
The person at the gate tells me it’s not his job. I say ‘ that’s why I’ve given you the name of the assistance person who specifically said she would come down and take care of me’ …

More confusion- don’t know who she is?

Another fella walks by, wearing a pass.
He asks what’s going on.
We tell him.
He phones the assistance desk and eventually the lady comes. She is smiley, but one of those people who use a thousand words when 10 would do.
The more she says, the more confused I get.
The lift is now working, but at the same time it’s not working, she said. That really filled me with confidence. I just looked at her, thinking ‘ ffs can you just not tell me what I have to do to get on my train , and do it by leading me through the station via the correct route to end up where I need to be ?’

But no, she couldn’t do that. Instead she said another thousand words that didn’t sound promising.

Eventually we went quite a long way to a gated barrier far away, to a promising looking lift.
Not too soon mate! This lift to the Plan B option was out of service.

She and two colleagues then talked for about 10 minutes in Dutch.
Then she proposed that I catch another train, then another one again, to get me to eventually join my booked train journey somewhere else, in another far flung station.
I said ‘ two more trains and two more sets of ramp assistance?’ Yes, she said.
No, I said. That sounds ridiculous.

I was then told to wait inside a ticket office place until someone else came.

I then received 3 phone calls from Eurostar assistance.. and it was apparent that they didn’t know I was ( allegedly) already being helped.

More waiting around… and then a guard who was very much acting urgently told me to follow him as we only had 4 minutes to catch the train.
I’d been inside the station for 90 minutes by this point.
Gina and I then chased this fella running through the station. He was the first person I had even a molecule of confidence in, despite it looking like we’d miss the train we were rushing to.

We didn’t miss it though. It wasn’t a Eurostar train, it was a regular train going to Rotterdam, and we got on it, and ramp people were there in Rotterdam to get me off it.

Now we are on a Eurostar train to London.

Unless you are in a wheelchair, you don’t know the half of it, I’m telling you.

My urine.

My UTI problems go on and on.
Here’s what happens- i know I have a UTI because i suffer all of the symptoms.
I take the drugs and I also drink a shed load of water- as in 6 litres a day ( 2.5 in the night, in bed- 3 large bottles close to me in the bed )

When I submit a urine specimen to be tested, guess what? It’s clear coloured and ‘ looks healthy’
Traditionally, when you have a UTI you have dark, smelly urine… so the story goes.
Well you try having a UTI and having dark urine when you drink 15 pints of water every day! It’s not gonna happen, is it?!
Amazingly though, even the urologist can’t seem to get his head around that?!
He says – you now have far less inflammatory cells in your sample – derrrrr well of course I bloody do- it’s so bloody dilute, there are BOUND TO BE A LESSER CONCENTRATION OF WHITE BLOOD CELLS.

But I can’t convince him of this.

SO this last specimen ( yesterday ) I didn’t drink any water for 6 hours.
Then I got a vial full of pee from my bladder.

Well imagine if you blew a nostril full of wet snot into a glass of Orange Squash — yep, that’s what it looked like.

Can’t wait to hear the results this time …

Brixton

Omw, how good are Wet Leg?!
That lady has to be the sexiest woman on earth.

I think all 5000 people in the venue, male and female, all fancied her.

Me n Jeanie had a blast.

Yes

New antibiotics!
As in new for me anyway.
God it’s a fight to get drugs to treat infections. It’s like they do and say anything possible to stop you having medication that’ll cure you.
Obviously it’s not the same all over the world- you can just buy what you want in many countries, almost without regulation.
Here though, even when it’s blindingly obvious that you need something different to what failed to cure you last time.. they still don’t want to give it to you.

But finally I am on something new.
After 36 hours, it’s better than it was before I started.

Fingers crossed.

And I’m seeing Wet Leg in Brixton tonight.

Sounds like something that happens to me from time to time in real life.
Doh.

And I went to the Chelsea Flower show yesterday- very nice too.

Yikes

So I went to see my urologist yesterday.
I went because he wanted a fresh specimen to test, and also to supply me with a new therapy – called cystastatine.

We had a chat and he said that when I went in a few weeks ago and I had a test , he was surprised by the results. He said that it’s not just about the bugs in the urine, it’s about the amount of white blood cells – the measure of inflammation.
He said that my count was 600.
I said – is that high? What’s normal?

He said – normal is zero.
600 is VERY High.

See – told you I’ve been ill.

Progress

Am I or aren’t I free of this infection?
Half the time I think I am and half I don’t…

I left a urine specimen yesterday so that should tell me.

I’m getting some very different physical changes ( not necessarily positive ) that are occurring, so clearly my body has undergone a change.
Therefore I think I am probably free of infection for the first time in years possibly.

I slept reasonably well last night ( for me ) so I’m optimistic.

I went to see Giant the other night
It’s about Roald Dahl, and the period in his life that he was accused of being anti Semitic.

The play leaves you to make your own conclusions on whether he was ( at all ) or not.

It was very good and it was about his character and personality. Blunt and straight talking ( my kinda guy! ) to me he was the best type of character.

Being accused of being anti Semitic wouldn’t have been good for sales of his books, but I don’t think he was bothered in the slightest about money anyway, so his reaction to the accusations weren’t influenced by that.

It seemed to me that he was probably like most British people are about the Jewish race – incredibly appalled by their persecution by the Nazis, as well as almost certainly siding with them in their ongoing Middle Eastern racial conflicts, but at the same time hoping that their actions are ‘ measured’.
No war/ killing is best.

As for Mr Dahl, he probably did say the odd crass thing, but who hasn’t, ever?
It’s probably a very good thing that he wasn’t in his heyday now, now that every single thing people write is scrutinised so much.
Now of course his books are being ‘sanitised’ to remove anything offensive to anyone at all.
Christ, what a ridiculous state of affairs.

At the end of the day, no matter what you think of him, his books are uniquely brilliant.

Gulp

After a big hiccup in the second night.. i think this treatment has worked.
God, please let in continue.
2 decent sleeps ( 1 shite one in the middle ) and lots of other unexpected stuff happening to my body.
No, I can’t walk or anything.

But it’s positive.

Good so far!

Well bugger me.
A mere 10 hours after my first intravenous injection of the right antibiotics, and I slept better than i have for 18 months.
It’s not fully effective until 3 days in but bloody hell, what a difference.