Whenever I put my chair into the stand up position, my body goes into crazy violent  spasm mode – like it did before my 4 operations. I do hope that this doesn’t mean it’s all coming apart again internally? As I can never tell why I’m spasming, I can never guess, let alone be certain, as to why it’s happening. I also seem to become quite lightheaded, when elevated.

Notwithstanding that fairly significant distraction, my days have been full of productive time, of late, doing various administrative tasks that have not been my focus for far too long.

I met up with a lovely ( crazy in a good way ) lady called Lisa, whose only connection with me is via my blog, which was a good laugh to be sure, spent time with my mother ( it’s been a while since the last time ), with my employment lawyer, Piers, with Cress and Toby ( Cress helping me in a very intimate bowel related way –   truly grateful ), with the always fascinating Paul Lambert, with my sister in law, Sam, and with my carer, Marie, and even seen ( fleetingly ) my daughters, who do seem to lead far busier lives than I did at their age, though doing completely different things to those available to a Welsh boy in the 70’s.

I’m making progress with accessibility to venues, and have arranged to send back my car to Motability, on the basis that I cannot any longer get into it to drive, it therefore being a pointless day expense.  In the pursuit of trying to save, I’m also very keen on trying to catch buses, rather than wheelchair accessible vehicles ( WAV’s ) as I can travel for free, tho I need someone with me to  get me up and down the ramp that comes out of the side of London buses … you press the yellow button on the side of the bus, the bus suspension lowers by about 10cm, sirens go off, lights flash and a telescopic ramp slides out of the side, and onto the pavement. As it’s about a 1 in 6 upwards slope, I’ve got no chance of getting up it alone, my fixed spine allowing virtually zero pushing power now.

Once in the bus, there’s always the slightly awkward moment when a  mum is legally obliged to move her buggy and baby out of the wheelchair space, it being a legal obligation for myself to travel inside that space, but I smile and apologise and the lady invariably jumps up and moves the pram for me. It’s not ideal for the pram to be in the aisle either, but there isn’t another solution.

Soon I’ll take delivery of the electric front wheel that fits onto the front of my chair ( see video – not me in the film – thanks to my stunt double (?) Phil, and his dog ( name unknown ) In fact, it might not even be his dog at all, it could be a random one chasing him, or being chased by him, depending on how you interpret it. Either way, as far as I know, no humans or dogs were harmed in the production of this video, despite there being no sign of abiding by the Highway Code by either Phil, or the dog )

It actually goes as fast as 30mph – there’s possibly the way I’ll next manage to very nearly, or definitely, kill myself. I don’t think that there is any obligation to use a helmet, or lights, but I will actually use both if I venture out at speed, or in the dark )

I’m not sure if it looks cool, or like something out of Wallace and Gromit, but I don’t really care.

What a friend I have in Cressida Strauss – there’s a person who has gone way beyond friendship today. 

There are angels on this earth, not just up there in heaven.

https://vimeo.com/192976732

Hiya!
You’ll be pleased to hear that I’m still sticking to it and I’m now down another kilo.
That makes 6 in 2 weeks. I damn well will get that first stone off before Xmas!
Love,
******
X

Sent from my iPhone

http://www.bbc.co.uk/programmes/b083qrw7

Copy and paste the above into your browser and you’ll hear my dulcet tones about 17 minutes into the show.

I do speak more than once!

Right then.. I’m on Radio 5 Live at 10.05 this morning, speaking to Adrian Chiles…

It’s totally out of the blue, after an email from him last night.

My voice is a bit crap today, but I guess they’ll amplify it…

I’ll try to temper my Tourette’s for 20 minutes, but  who knows how successful I’ll be.

Interesting couple of days… having become involved in another person’s optical situation.
My extremely kind hearted and polite carer, Anna, has been on the receiving end of some extremely poor service from her opticians, who have not acted professionally, and have very much put the customer’s happiness last in the list of priorities.
Knowing a fair bit about the ‘ rules and protocols ‘ that high street optical practices are supposed to abide by, I phoned up on her behalf, and politely pointed out her rights as a customer, explaining my rank and experience within the optical profession.
The  so-called manager of the practice proceeded not only to argue, but also to actually put the phone down on me TWICE?!
That was very much a new experience for me, in my 30 odd years in optics.
A call to the Head Office of the company ensued, my tale being listened to in horror by their customer service representative, who assured me that the issue would be resolved forthwith. In actual fact though, 2 days later, various phone calls and a visit to the practice by my carer, has resulted in her being completely ignored by the same ‘ manager’ and his 2 bosses .
Today, 4 days later, Anna has been told that she can get part of her money back, if she calls in to the practice next Sunday.. in 7 more days’ time…

I find this most surprising and am shocked by the way that Anna has been made to feel bullied and powerless by this practice. As I have now adopted her problem as my own, I shall resolve it and seek recompense for her time and travel and disservice.
I feel very ashamed on a personal level, on behalf of my profession.

If anyone at their Head Office is reading this  diary ( unlikely ), I would urge them to give me a call ASAP so that I can write about a happy resolution to this unfortunate affair…

My stomach continues to bloat to a level that is very unsightly. Anna, who is rather an expert on quite a few holistic topics, is convinced that probiotics are the answer, and I am as quickly as possible going to start a regime of  those . I do, after all, take so many nasty medications that destroy my natural gut flora, that it’s no wonder that my insides would be in a mess .  I do read that your stomach and intestines do always react in some adverse way to most illnesses and conditions, so it does make sense that my own are suffering.
Having  a paralysed lower two thirds and now looking 4 months pregnant too, isn’t my idea of physical happiness.

Today I had a choice of what to do ( then again, doesn’t everyone ) so I went with going to a circus kinda show called Bianco, on the South Bank of the Thames, which was pretty good, but not fantastic. I think the trouble is that it takes more and more to impress us, as we see the impossible on TV all of the time.. so someone using 5 different hula hoops at the same time – 2 wrists, 1 neck, 1 waist and 1 leg, whilst stood 20 feet up on a platform as big as a tray, just doesn’t seem anywhere near as big a deal as it should.

I never mastered just one hula hoop ( and I really did try ) so I should have been absolutely awestruck.

I might be on the radio tomorrow btw, at 11 o’clock ish, on the Adrian Chiles Show.

Jayne:

I thought of you today when a woman tried to assist a man in a wheelchair negotiate a small space that was crowded with Christmas item decor, he barked at her and said “just leave me alone I can manage”. LOL….
Win some, lose some….

Me:

God I’d never react like that.She didn’t lose though, he did.
He failed to appreciate an act of well intentioned humanity.
Xx

Jayne:

No you wouldn’t, but that’s the dilemma for people trying to be kind….will they get ‘you’ or will they get the dickhead? ? xx

Me:

Who knows?
But still worth taking the gamble, I’d say. X

Jayne:

???

Me:

He wasn’t angry at her, he was angry at whatever injustice left him in that wheelchair.
Just unfortunate ( for them both ) that he’s not able to make the right differentiation.

I’ve had a full on week, and sort of accepted that my compromised body can’t really take it, at least not currently.

Ive seen various long term lovely mates, such as Kev, Pia and Mike S, a lovely ex Colleague in Catherine, and met some newer friends in Cecilie and Jolante. I seem to end up in conversation that’s a lot more meaningful than the superficial stuff I engaged in pre injury, when life was so simple. That doesn’t mean it’s deep and dull, as it’s not – I still  mess about and take the p***, though much more about myself, and my frontal lobe concussion makes me even less inhibited than pre injury ( and that’s saying something ) Also, I definitely decline to  meet up with anyone that isn’t open minded about discussing things like a grown up , or is liable to take offence over trivial things, as I definitely only want positivity and not controversy or hostility  in my life.

I find that I tend to say it as it is more now than before, I think on the basis that I have it so bad and have done for so long, that other people’s problems can seem so trifling by comparison, and that I can politely point that out. I think most people definitely understand that, when they look me in the eye and talk to me in person, though the media of texting and emailing is liable to misinterpretation from any side, one’s level of sensitivity/misinterpretation depending on one’s OWN state of mind when one opens the email or text.

I went to the cinema with Pia, but promptly fell asleep and missed most of it. I think it’s just fatigue from irregular sleep with lots of interruption from spasms that reduces the quality of slumber drastically, but sometimes I feel such an overwhelming desire to fall asleep that I wonder if I have narcolepsy ( as has a friend of mine, as of late, and as did an uncle of mine )

I am on so many bloody tablets that I guess anything is possible though, in terms of my level of alertness. At the last 2 RGS lectures, where the lights are low and it’s quite warm, I’ve had to resort to poking myself in the ear to keep myself awake, that being quite a painful area and a lot more worthwhile than poking myself in my leg, or even my balls.

This week I taught someone to put in her contact lenses, this lady having tried and failed to do it for a year or two, and wearing lenses can be quite life changing, or at the very least make you look a lot better in a posh dress.  She wrote …

Good evening Mr D,

I can’t tell you how happy and grateful I am that you showed me the lens thing yesterday. I tried again today. It didn’t happen until 2pm as I kept postponing  it. And it took 30 min but I feel I am sort of getting the hang of it now.  At the moment I just love not having to deal with those annoying glasses. So Thank you so much again!!! you are a star and very patient too!!!!

I’ve never failed to teach anyone how to do it, in fact, so if you want me to teach you, just ask me.  I don’t do home visits, so you’d have to come to me.

Actually that’s not true completely – I did fail with my mate, Larry, who started trembling before he even got the lens out of the packet. I was on a skiing holiday at the time, and the alternative to persisting was a cold beer in the bar, so no competition really. I did manage to get Larry in a headlock and force it into his eye at some later point ( probably after the beers on another night )

Another close friend has adopted my diet and exercise advice, to the letter, and lost 11 pounds in 2 weeks, so she’s also quite chuffed. Again I’m very happy to impart a bit of wisdom there, but only if you actually stick to the plan I give you, as that’s always the sticking point – people want to lose weight but don’t want to give up their bad eating addictions, and ‘no exercise’ regimens. I can tell straight away if someone is a lost cause, as they immediately dispute dietary advice, proclaiming themselves experts ( despite being very overweight ).

I’ve been very proactive in contacting various venues to find out about wheelchair spaces to see bands, as no ticket sites seem to offer accessible tickets. You have to contact the venue and do it through them.  The good news is that your carer ( mate ) gets in for free…. and it’s free drinks all night, too.

I’ve got  several dates almost fixed for the next 6 months, feeling the need to catch up on lost time.

Okay so I lied about the free drinks, but I have noticed that security NEVER ask to search a bag attached to my chair….. not that I’d ever take advantage of that situation, being as pure as the driven snow, me.

Very cool talk by 5 lovely ladies last night. All part of the Coxless Crew that rowed the Pacific.

They planned on 6 months, but it took them 9 months.

None of them looked like the type of girl that would row the Pacific – all were more ballet than hockey girls.

In common with Astronaut selection criteria, the team was chosen more on the basis of being chilled out types than super driven athletic types.

Its no good if everyone rows as hard as they can, but fall out with each other after a fortnight at sea.

I know from my Yukon 1000 mile experience that having an extremely chilled, non confrontational partner to defuse my testosterone fuelled approach, really does ensure tolerance and harmony ( and race completion )  in the boat.

There were lots of sensible questions at the end, by the audience.

I thought more laterally, and asked how often they thought about sex whilst at sea?

The most  innocent looking one said ‘ it’s the last thing you think about, out there in the vast ocean ‘ and the other one ( more of a twinkle in her eye )  said ‘ I’m not gonna lie, it was quite a lot ‘

Then I asked the obvious ‘ does coxless refer to the fact that you’re all female, or something to do with having no coxswain in the boat?’

Twinkle said ‘ it’s whatever you want to make of it…’

They all loved the experience, but never, ever want to row again.

I recall Steve Redgrave saying that after only his 3rd Olympics.