And after a week of doing stuff in Portugal…

Cape St Vincent is pretty momentous. The edge of Europe: next stop due West is South Carolina in AMERICA … the rugged edge of a continent… with a suitably cool lighthouse.

Tavira is a medieval town.. cobbled streets aren’t wheelchair friendly but hey..

And Praia da Rocha to see my old buddy, Lee ( my ex looker afterer ) .. wow what a beach!! Not accessible to me but at least I could see it from above.. and it’s magnificent. Lee made me drink lots of pints of lager. Bad man. Met his mum and dad too – they’re all lovely, even though they all support Everton.

And then poor Gina has to get a bit pissed bloke in a wheelchair into a car. Not sure if that was harder or easier than doing the sober fella.

And the journey back was problem free.
Imagine that?
Got to the airport early/ onto flight without drama / landed in GB / out and onto a train ( early ) and home early. Ramps turned up, people were expecting me etc etc.

Whatever next??

It’s raining in Britain. It was 25 degrees in the Algarve.
🤷

Massive gratitude to Gina G. ❤️

Continued…

We go back in.
We ask again if Lift 13 is working or not. He says it is working fine.

Up a lift, across to the other side of the station ( the side we’d left an hour ago ).
With trepidation I approach Lift 13.
It’s working. For Christ’s sake. It’s good obviously, but also it’s bloody frustrating.

The platform person is expecting me. Wow, things are looking up.
It’s about 5 minutes wait til the next train, and the ramp is attached for me to get on.
As usual there are lots of people on the train. I have to drive at speed up the ramp or I don’t make it to the top. I normally stay in that bit of the carriage for the whole journey. That’s the bit of the carriage you walk into at first before turning left or right to find a seat. Obviously I don’t use a seat and most carriages don’t have a ‘ wheelchair space ‘. I stay In the middle bit because I have to.

For some reason lots of people want to loiter In the middle bit for long parts of the journey, and of course people go to that bit when they are going to be getting off at the next station.

So when I want to get into a train, up the ramp, I obviously have to charge up the ramp to that ‘ middle bit’. I have to go at high speed to actually get up the ramp.
I always have to ask ( from 20 feet away ) repeatedly for those loitering people to vacate that area. Invariably my request is met with blank looks. After a few asks, I just go for it.
There seems to be no ability to connect the ramp/ my request/ a large and powerful looking half wheelchair half motorbike shooting straight towards you .. with move out of the way.
Mind you, as I crest the ramp at high speed with a ‘ I did ask so it’s your fault ‘ look on my face, they invariably scatter right and left… most of them in time…

It’s the ones with prams that surprise me most. I’ve actually had to resort to ‘ look, will you please move or your baby may die ‘. I mean it’s bizarre that I have to resort to that, isn’t it? ( it does work, that line btw )

Having got on the train, the rest of the journey was ok.( Ok in my world of crapness of travelling, that is. If you had to suddenly do what I have to do, on your trip to Barbados/ Tenerife .. you’d be traumatised )

Ok, I’ll try to tell it how it is.

When I book flights, I have to ‘ add special assistance’. You can try to do it online but it’s less tedious to phone up.
I’ve flown EasyJet from Gatwick many times. These last 10 years I’ve needed Special Assistance. Do you think they keep your Assistance notes on file? Of course they don’t. Every time, you have to go through it like it’s the first time.
I have a wheelchair, yes? Is it manual or powered? What’s the weight of it? What’s the height of it? What’s the length of it? What battery type is it? Do the batteries detach? What’s the voltage of the batteries? What’s the amperage of the batteries?
Can I walk from the gate to my seat? No? Do I need an aisle chair? Do I need help from my wheelchair to the aisle chair? Do I need help from the aisle chair to the airplane seat? Do I have someone with me who can help me get to the emergency exit in case of a crash? ( Ha! Good luck with that one mate ). Do the batteries detach? Is there a key?
I answer all the above questions at the time of booking.

Two days before I fly I get a phone call from the airport. What type of wheelchair do I have? What type of batteries are they ? What’s the weight/ height/length of the chair? Can I walk to the airplane seat? I answer them all again.

At the EasyJet check in desk ( now I’ve already checked in online but I still have to go to check in ) they say … wait for it… what type of chair is this? Can I fill in this form to detail weight/ height/ length and battery type… do the batteries detach with a key? Can I walk unaided to my seat or do I need help? No? Do I need an aisle chair? Do I need help transferring?

Then I have to go to the Special Assistance desk.
What battery type do I have? Do I need help transferring?

I then go through passport control… and get hand searched… and prodded. Probably everyone else does though.

I then have to go to Special Assistance on the ‘ gate side’ Do I need help getting to the gate?
That bit I sometimes say yes to. It’s just a more certain way of getting there.

At the Gate for the plane another agent turns up.
What battery type is this? What wattage and Amperage? Do they detach? Do you need an aisle chair?

As you can see… it’s not like it used to be. Taxi to the airport, wander around Duty Free for 2 hours, have a beer or two and amble to the plane..

They escort me to the Door of the plane. The next bit is always fraught. I have to get the Triride off. Then I have to get into the aisle chair. That requires the help of 2 people. The aisle chair is very narrow and my body always tips to the left out of it, as there is no supportive backrest. They strap me in as best they can.
I am then in the uncomfortable position of trying to ensure that my empty wheelchair then gets reattached to my triride. This ISNT straightforward at all and I can’t move at all to help it happen. It’s not possible for me to move the aisle chair at all so I have to tell people what to do with my triride to ensure it’s attached properly and doesn’t get broken/ damaged.
Gina has done this bit many times but seriously it’s technical. There are 6 things you need to do, and they have to be in the right order. There isn’t any other way of doing it other than in the 6 steps.
Gina knows all the steps but definitely doesn’t remember the sequence…
She also has to detach the batteries, remove the wheelchair bag, help with the transfer and carry everything to the airplane seat. Once there she has to help me from the aisle chair to the airplane seat. She’s much better at it than anyone else is. It’s a series of about 10 things involving my legs, 3 sets of armrest lifts,
( well you try Getting to the window seat when 3 sets of armrests are down when you can’t walk and have legs that are rigidly immovable in front of you ) the placing of a wheelchair cushion under my arse, and the stowing of luggage away.

The flying bit is usually uneventful. Obviously G has to do everything bloody thing for me, as I’m just stuck in the seat, but she’s ok with that, bless her.

When we land it the whole shebang in reverse. Out of airplane seat/ aisle chair/ drag down the aisle to hopefully find my wheelchair and Tri intact. We then need to get the Tri off so that I can be lifted into my chair. Then I need to get the triride on again. This is usually in a confined space at the aircraft door or sometimes in a special vehicle that pulls up to the side of the plane ( if there is no air bridge ). Both are uncomfortable experiences – lots of people surrounding me but none of them having any notion of what I heed to do ( not their fault, just how it is )

So We got to Faro airport ( Portugal ) and by then it was dark.
The next bit usually entails me ordering an Uber for Gina/ my companion and me going it alone on the road to the destination – my lil apartment there. When it’s daylight Its okay (ish ) to do the 8 miles on the major road … in my wheelchair… ( it’s like a dual carriageway ). In the dark it’s not so pleasant, because they don’t have road lights here anywhere near as much as we do in the UK.

This trip it was dark in Faro.

As I’ve never been here in the winter, I hadn’t predicted how dark it would be at 8pm. Trust me, it was dark.

BUT (!) .. this time G picked up a hire car at the airport.
So this time as I did the 8 miles on the dual carriageway in the dark.. I had a lady in a car driving slowly behind me with her hazard lights flashing..AND her headlights on to illuminate the road in front of me.

Let’s face it, it’s far from ideal, and it’s almost certainly illegal, but hey it worked.

A trip abroad with Gina G.

An account.
Sit down.
This takes a while.

I booked the flights a while ago.

I added the airport ‘ special assistance’. That means detailing my wheelchair and the power attachment, whether I can walk down the aisle of the plane or if I need an aisle chair to get me from the door of the plane to my seat; whether or not I have someone with me that is able to help me in the event the plane is going to crash. Tbh in the event the plane crashes and I’m still alive , I have absolutely zero chance of getting from my seat to the outside.

What if I was the only survivor of the catastrophic impact but then paralysis meant I couldn’t escape? That would be quite funny.

I booked the train tickets.
I booked the Passenger Assist via the app. That mean they know I’m going to board a certain train from a certain station and I need a person to get a ramp so that I can get on the train, and also at which station stop I’m getting off… requiring a person to know which carriage I’m in and to get a ramp so that I may get off.

It’s the day before I travel and I get a phone call from Passenger Assist. One of the lifts at Clapham Junction isn’t working. Whilst I can get to Clapham and leave the station, I can’t change trains there and go to Gatwick airport because the lift to platform 13 is broken. The lady on the phone tells me I have to exit the station and get into a taxi ( at their expense ) and travel to Croydon East station ( around 9 miles ). Once there I can get a train from Croydon E to Gatwick airport. The lady knows I’m in a wheelchair. I go through it with her though. I’m in a wheelchair and I can’t get out of it, so I need a wheelchair taxi that has a ramp or a lift to get me inside it. Absolutely she says, that’s what the taxi company will send. All very professional and reassuring….

We arrange to get an earlier train ( an hour earlier ) so that I have plenty of time to get to the airport on time.

All good then.

Today we left my home at 11.30. The 11.54 train arrived at Brentford station. The guard gets off the train. He has no idea there’s a bloke In a wheelchair that needs a ramp. Now that bit is sadly normal. No one has ever had any idea at Brentford station, in all the years I’ve used it. However they do get the ramps always and I always get on the train.
We travel to Clapham Junction. In CJ they have always checked the Passenger Assist list and someone always gets me off.
I know I have to exit the station on the south side and that’s where the taxi will collect me. I was told the driver will definitely call me ( as he/ she will have my mobile number ).

This is where it all starts to go tits up.
I leave the station via 2 lifts and go outside and wait in the car park. It’s raining. I look at every van/ minivan type vehicle in the vicinity. There is no indication that any of them are for me. After 25 minutes I am doubting I’ll get to Gatwick. I call Passenger Assist. They have no record of my booking. I tell them that oh yes they do, because they themselves made the altered version that Included the taxi transfer. After the reservation number, my name, my phone number and 5 minutes of being on hold they located their own booking. All good then, and in fact the driver had been waiting there for me for some time….
Ok I said, what’s the registration number of the taxi. They gave it to me. I had another search and told them there definitely wasn’t a taxi waiting with that registration plate for me. Don’t worry I was told, he’ll call you and be there.

Another 10 minutes pass. It’s still raining.
No taxi comes.

Gina goes back into the station to ask the Assistance people what’s going on. I wait outside in the rain.

While she’s gone I get a call from the driver. He said he’s been waiting for a while. I asked why he hadn’t called me. He said he wasn’t given my phone number.
I asked if he was in Grant Rd, as arranged? He said no, he was at the opposite side of the station.
I asked him to drive to the Grant Rd side. He said he’d be a few minutes.

Another 5 minutes went by. Gina had come back and said ‘ the assistance person in the station said the lift to platform 13 is working fine? But he’s clearly ‘ special needs’ himself so I don’t know whether to believe him. ‘

Seriously I said? Well the taxi van is about to arrive so I think I’ll trust that more….

Hallelujah, the taxi van indeed drew up. The driver opened the side door. I looked inside and it appeared to be full of seats, rather than have a space for a wheelchair. Can you get the ramp, G asked. The driver looked blank. I don’t have a ramp, he says and gestured for me to climb in and sit down.

I said… I’m in a wheelchair because I’m paralysed and can’t move my legs…. let alone climb into a high up taxi van. Is this not a wheelchair accessible taxi, as booked by Passenger Assist the day before?

Well they just told me to pick you up in a van, they didn’t mention anything about wheelchairs…he said ( in broken English )

Clearly at this point I’m very f’d off indeed and very much assuming I won’t get to Gatwick.
There IS the option of me going by road in my chair to Croydon East. It’s 9 miles and it’s the very worst of South London. I’ve tried that before. There are traffic lights every 50 bloody metres and a junction every 25 metres. It’s INCREDIBLY slow going.
And it’s raining.

Well let’s go back into the station and see if the lift to Platform 13 IS working, says Gina.
In we go, me swearing profusely to myself at how fallible the Passenger Assist system is. Occasionally it works well ( as in the staff are expecting me and know my name as I arrive, know what time train I’m on and know where I’m getting off )

No one in either Brentford or Kew Gardens has ever been expecting me. I turn up, say I’ve booked assistance and there is a blank look. Brentford isn’t even a manned station, so the Guard on the train is the one that should know.
Thats never happened.

When I say what I need, to staff, it nearly always works. However I never ever trust it.

In principle, the station knows I’m coming and for what train. Well often they have no clue. For them to expect me, someone has to have the role of reading the assist emails. Since staff work shifts …. then someone on every shift needs to have that duty. Well clearly that’s not important to some stations, whilst others take it very seriously. Some stations are completely organised and in some stations they just wing it. The person in charge of the station is responsible for their staff being given that duty.
Some stations do it properly, some don’t do it at all.

Christ, we haven’t even got to the airport yet.

To be continued 🤦‍♂️

Ole Vic

Went to see Just One Day last night at The Old Vic. It’s about the Live Aid phenomenon. Well it was a pretty amazing thing- all dreamt up and put on in an unbelievable 6 weeks. It raised £110 million pounds from public and corporate donations. That’s around £300 million in today’s cash.
The actors didn’t dress up as the original artists – it would have required a blimmin massive cast for a start. Boy George’s character was in it. Back then he was pretty much the only person in the world of non binary gender Now there wouldn’t be anything stand out about him at all. He/ she would be lost in the non binary rush.

It was very good! Go and see it.

And the staff are very good with we wheelchair people, as well.
Thanks to them !
♿️❤️

It’s bloody February

Haven’t visited this diary for a while.
Life has been better.

I have been able to sleep and Christ that makes a difference. Ive been exercising a fair bit too and that helps me to sleep.. it’s all related.
January wasn’t exactly busy but it’s been ok merely because it was a shit load better than September to December!

I’ve been doing stuff/ going to things often enough for it to be fine. Tomorrow is my mum’s birthday ( it was my Dad’s last week ) and my folks are coming down to stay. We ll have a good time I’m sure!

I’ve had the usual calamities with wheelchair breakdowns etc but it’s all in hand generally.
Tomorrow night is the theatre. Had to bump Kerry for my mum to come. Twelve Angry Men, it is. I told Kerry it sounds like a play about all her recent ex boyfriends….. 😂

Anyway… back soon I’m sure!

Cox

I went to see Ferrari the other day with my old mate Marky P. Access in cinemas is a bit hit and miss. Get it wrong and you end up right at the front about 15 feet from a 100 foot high screen. That’s like sitting 2 feet away from your telly
at home.

For Ferrari however the lift was working and we were at the back in a little box area. All good up there. Absolutely brilliant film. Best I’ve seen for a year or so. He was a bit of a lad was Enzo Ferrari, what with his fast car factory and his long term mistress / second family.
Go and see it. It’s quite a story.

Then last night Kerry MS and I went to see Prof Brian Cox speak in Richmond. Gawd he’s a clever fellow… just like all of those astrophysicist types… I know he did his best to dumb it down… but clearly not enough for myself! Still incredibly watchable though.
Among the things that stuck were that in all likelihood we here on Earth and probably the only planet like it in the entire universe. To achieve what we have here doesn’t just take the right temperature, minerals, elements etc but also critically requires the planet not to be regularly ( or even infrequently ) battered by asteroid impacts that destroy all life on a regular basis. THAT is a very key feature! Makes sense, right ?

Last night.

So last night Gina and I went to deepest darkest North East London to see a band called De Staat. We met up with Leighton and Bev.

The Hackney Tap ( pub ) is, according to its website, wheelchair accessible. When I got there ( in the ibot ) the 2 front steps ( only way in ) are about 10 inches high, each. Whilst the ibot can do steps, it can’t do a virtual wall of 20 inches.
On the wall next to the main door there was a nailed on metal plate saying WHEELCHAIR ACCESSIBLE. Relieved, I expected and waited for someone to come out with a large and long metal ramp…. that being the implication of the signage.
Imagine my surprise then when the disinterested staff member said that as far as he knew they didn’t have a ramp… I pointed out the sign only to receive a shrug… ok then!

Leighton n Bev were already there, had got drinks and had ordered food… therefore they didn’t really want to leave and go somewhere else ( understandably enough ).

But for me to get in was a challenge.

But wait… up steps Leigh ( Jones ) with a solution. Off he went and came back with ( wait for it ) .. some cardboard to build a ramp.
Yes… whilst it may not be the obvious material with which to build a ramp strong enough to support a wheelchair weighing 150kg and a bloke in it weighing 88kg… he set to work folding up the boxes.
Now I know what you’re thinking – that’s never going to work for God’s sake.

Then, Disinterested staff member suddenly appeared with a metal ramp, having phoned the person in charge of wheelchair ramps. The 20 inch elevation ( legally ) requires a ramp of of 160 inches length. That’s 13 feet and a bit ( about 4 meters ). The ramp he was carrying was at most 2 feet long ie a bit short. The ramp didn’t even go from the bottom to the top of the 2 steps.. but the fella thought I should have a go anyway.

Well knowing that a falling over ibot isn’t something I can leap from to save myself… I was reticent to try it.

However.. with Leigh’s origami skills with cardboard, and the climbing capability of the ibot… along with 3 people pushing me … somewhat unbelievably I ascended the completely 100% unsuitable structure, obviously wobbling precariously for the longest 5 seconds of my life. What Leigh is doing working in recruitment I’ll never know. What a waste 🙄

Looking very chuffed with his engineering achievement, Leigh then regaled Gina and I with sexual shenanigan stories of his friend Simon, who has just been caught by his wife and is now homeless… mmmmm good skills that man! There’s always a winner.. and in this case it’s the Wokingham Premier Inn.

The gig was bloody brilliant, although the wheelchair lift space doubled as a booth for selling gig merchandise and the cloakroom attendant’s area. There seems to be an awful lot of loose adherence to wheelchair patron health and safety in Hackney, but with Leigh Jones there I knew I was in safe hands.

The names Jones and Kingdom Brunel can ( from last night ) always be uttered in the same breath. Indeed had Jones been in charge of the Clifton Suspension Bridge project, they’d have saved an awful lot of money! Steel ? Schmeel!
Herald the new miracle construction material…… Cardboard!

And if it gets wet and falls down, well the rebuild costs are so bloody cheap! I really don’t know why no one has ever thought of it before.

Idiots these engineers.

Rain. Biblical.

Alexa told me it might rain ( 0.2mm ) at 4 o’clock yesterday.
I went out and met my buddy Omer the refugee. We went to the View from the Shard. Well I only buy one ticket and he goes free as my help.
Anyway it rained… and rained… and rained. The view was just mist and rain and greyness and it was packed up there. Probably people ‘ working from home’ as there weren’t any kids.
At some point we had to leave and brave the return trip.
Jesus when I eventually got to Kew, the roads were 6 inches deep in water. 0.2mm my arse.

Thankfully cars didn’t just scream past me and soak me In huge waves…of spray. Well they weren’t going fast enough to do that by and large, but drivers showed me compassion, I have to say.
Yes I got wet, but it wasn’t so bad because it had actually stopped raining.

Jeez to be a refugee. He’s a maths professor at home. If he goes back he’ll be jailed, he thinks deprived of his heart medications in jail … and then soon die. Here he stacks shelves in Sainsbury’s. He earns minimum wage, pays 2/3 of his earnings on his YMCA room, sends home nearly all the rest. He has less than £90 a month left for himself, from which he has to eat and pay for the bus.

His family only phone him to ask for more money.
His children don’t want to know him.. because he left them… well actually he escaped jail. If he had stayed then he’d almost certainly have died, as he wouldn’t have received the heart care he needs.

Either way he lost everything.

I know how he feels.

Happy new year.

A Christmas with my ole Mum and Dad.
Big love to them for coming. A Xmas Eve fancy lunch out and then an M&S Xmas dinner in a box on the big day. Not exactly stick in the microwave, but it wasn’t that hard to out. Don’t think my dad has ever made anything other than a corned beef sandwich, so I’m glad lunch wasn’t left to him.
Not that I don’t like corned beef.
Obvs.

Xmas telly and Bananagrams and Scrabble.
We did watch a film or two. Saltburn might have been the best one but after the gay sex and the bloody period scene… I paused it.

Shame tho! The second half is cracking… but watched by just myself later on. What a plot twist.

Thanks to Gina G in particular for looking after me of course. She’s my Christmas helper Elf, I’ve decided. Next year I’ll make her wear the outfit.

Have to say my Mojo is under a bloody rock somewhere but I’m looking for the f***er and I’ll find it eventually!

Bladder Botox was quite an ordeal.
Christ they first manoeuvred my legs into stirrups and then he stuck this foot long metal rod with a camera on the end into my ‘ organ’ and did it all on a video screen
If I could feel it, it would have been horrendous, I’m sure.
It takes 2 weeks… to take effect. Perhaps then my bloody legs will be less stiff?
I’ve had 2 nights of decent sleep as well. That’s been a bloody novelty.

Saw a band on Saturday night- Leftfield- in Kentish Town. Never seen a venue more packed. Who’d have thought they were still that popular?
Dick Whittington in Richmond theatre was very good! Thanks to Esme for coming on both Saturday and Sunday.

And also saw A Christmas Carol at the Old Vic on Friday with a special young lady.

And fresh outta Botox surgery I’m going to the theatre tonight to see The Book of Mormon. I saw it in 2014, while still in Stoke Mandeville hospital. I couldn’t even bring myself to smile back then, so I don’t remember any of it. Tonight should be better!

And lovely to see some very close friends on Monday at mine, as well as half the Toulon 12 cyclists last Thursday.
It’s been pretty busy then! When I was living on 3 hours sleep, that wasn’t helping much.
Now ( perhaps) that isn’t going to be the case going forward. I don’t know!

Skin lesions not cancerous either.
I live to fight another day then.
🤷🏴󠁧󠁢󠁷󠁬󠁳󠁿