After spasming all bloody day long, I’m now in bed. I can’t take any more ! Except the thing is that going to bed doesn’t actually make any difference to the spasms….the jolts are very significant.

God, they really do p*** me off in a big way, and I can do jack shit about them.

On the upside, I saw my buddy Rob C today, and my daughter Lily, as well as triking down to Charing Cross to visit my friend. I don’t think that being soaked by the rain really helped me though, but what can I do about the weather ? Archery was a non event, as it’s not done in the rain, despite my turning up. Did Robin Hood only shoot arrows on sunny days, I wonder ?

So having spent hours today on another wheelchair,  propelled by pumping my arms, I’m not tired at all. When I’m sat upright I have no trouble with my breathing – it’s just the lying down position that plays havoc with my respiration, so I need to be sat up more in my arm bike, except I don’t fit…. lateral thinking required.

Having said that we’ll all be dead shortly after Trump nukes North Korea very soon.

Despite that, I’m having a go at archery tomorrow. It’s not a sport that has ever appealed to me in the past, but who knows !

I went arm biking today.

Thanks to Jeremy, Sam, Sanjay and Roy for lifting me into it, as well as Stella. As my back is now ramrod straight and the seat of the bike is curved, I don’t fit properly anymore – there’s a big gap behind my back, in the middle, and loads of pressure on my neck, shoulders and sacrum, lots of which is bad news for me, and liable to induce pressure sores that I can’t even tell I’m getting. The fellas adjusted the back rest and Stella put padding in the gaps, to spread the pressure, which seemed to work – or at least I didn’t get pressure sores. I did get a big hole in my left shin where a metal lever was rubbing against me, and again had zero idea, as I can’t feel anything.

The worst bit was how breathless I got really quickly. My last outing I did a hundred miles in France, and I was ok. Today I did 15 miles and I really struggled to breathe. Am I just incredibly unfit, or is it to do with my metalwork and my different position? I don’t know, and it’s not like I can just hop out to tweak things to see if they make it better. It’s very frustrating, all of it. I have a month to go until I go to Portugal with the Toulon 12 for a 3 day ride. At current fitness/ positioning, ive got no chance, so I need a drastic training regime, starting tomorrow. I go to the gym every day, and am very strong, or at least the  few muscles that work are, but my breathing seems so awful. Anyway, I’ll see how I go.

Ive been to see my old buddy in hospital again. Variously he’s not been sure who I am, remembered everything about me,  thought I was his private doctor and asked me to go into business with him. All par for the course, right? He’s been really smiley though, most of the time, which is brilliant. I don’t want to see him in distress, but that wouldn’t prevent me from visiting, obviously. I am well acquainted with distress, after all.

I saw my 2 daughters today. One has just returned from Reading Festival ( I was able to help by packing everything that a person could possibly need at a festival, and giving it to her, for which she was very grateful ) and the other has had her eyebrows tinted almost black. She hadn’t heard of Groucho Marx, but now I’ve brought him to her attention, she is doing impersonations of him… with a pretend cigar. I’d post a video, but she wouldn’t be happy!

Lovely to see Clair and Charlie, and my Godson Freddie, and Nicola H too, on different occasions. Marky P and Cherie of course, too.

I have some lovely friends.

I visited a friend today in hospital, as I did yesterday. He’s there as a consequence of being found lying on the floor of his house, and taken in  to be checked. Once there, an assessment was made of his mental state and he has effectively been stopped from leaving, to his confusion and ( moderate ) distress.

He’s exhibited signs of dementia for some time. We’re talking several years, rather than months. Now he is certainly a danger to himself if left to his own destiny, so officially ‘ the best place’ is in hospital.

I won’t name him, but a lot of people who might read this will deduce who I’m talking about.

This man is a significant figure in so many people’s lives, as a consequence of something that he created, altering the paths of very many people in a positive way. To see his mental decline is heartbreaking. He definitely knew who I  was, and indeed remembered my visit yesterday, so his memory is still working, though at far from full capacity.  As is common in dementia, he has imagined various ‘ conspiracies ‘ that he keeps alluding to, including why he’s actually in hospital at all. He knows that he’s forgetting things, and names, but otherwise is certain that he’s perfectly ‘ sane ‘ and is about to leave hospital, including with me.

When you distract him from his invented theories,  he remembers all sorts of details, with impressive mental agility, as he has always been legendary for, so deviation of the conversation away from his paranoia is where you’ll find the man that you remember so fondly.

He was ‘ worse ‘ today than he was but only yesterday, and could have deteriorated more still by tomorrow, as dementia is tragically a one way street.

I hope that people will go to Charing Cross hospital to see him, and chat to him / keep him company. He may not remember who you are, or how he knows you, and forget that you’ve ever visited, but that doesn’t matter. Everyone has time to do the right thing.

Personally, in the past, this man has done much for me. He drove me to the same hospital that he’s now confined to, 15 years ago, after my daughter’s Christening party, during which I fell from a tree ( kind of ). Don’t ask for details!  I smashed my right cheekbone, as I fell onto my head, against a kerb. I remember looking up, dazed, and seeing him standing over me and then  helping me up, and into his car.  I could have ended up in this wheelchair that very day, but I got away with merely a smashed face requiring surgery and 4 days in hospital. He and I laughed about the incident only today, so he’s still ‘there’. When he deviates, it’s not him, it’s the condition that he’s afflicted with, so be understanding and filter out the reality from the confusion.

If there was ever a patient that deserved visitors, then this is him.

Please go and see him. I’d be very happy to tell you the ward details, if you message me.

Russ.

My very clever, and extremely hardworking daughter, Lily, achieved 11 A *s at GCSE, she found out today.

Incredible, given the heartache of the last 4 years.

Lets hope that she, like me, applies for Oxford University.

I didn’t get in, obviously.

I ( currently ) live about a hundred feet up, and have an outside Terrace, with a ‘ living wall’ of plants – well it’s not as though I could mow a lawn, is it?

Somehow the thing seems to have suffered an infestation of snails – the ones that grow to a large size.

At a loss to know what to do with the snails as I pluck them off, I ‘release them’  over the 100 foot high wall.

I don’t know what sort of impact damage a flying snail can do, or whether they can ‘ glide’ like some squirrels in the Amazon, but id suggest that if you are passing underneath my flat, after dark, that you don’t look up/ always wear a bicycle helmet.

This is how the view was for this man in the wheelchair from the accessible area at the V festival yesterday. The people standing are carers (people that get in for free, on the account that they provide help to the person with the disability).

The day before, after countless people tried to ask a young family to sit down so they could see, I intervened. I too asked them to sit down, and explained that the rows of people behind them could not see, and they did not have the ability to stand up either.

I was shouted at, sworn at, and told they had a right to stand. Throughout the day, officials came and went, but the family standing somehow managed to carry on standing, they did not seem to have an understanding of right from wrong. They felt it was their right to have a perfect view, dance around and obstruct the view of countless people sitting behind them.

I felt totally embarrassed – as an able bodied person, that people can be so disrespectful and naive in their views and behaviour.

So, if you do happen to read this post, and you’ve been given the opportunity to help a friend/family member/loved one – at a venue/concert etc, please don’t lose sight of the reason you’re in the accessible area (usually near the front, so pretty perfect view already).

Pia xxx

Yesterday was my birthday. Birthdays don’t have quite the same shine anymore, but that’s probably normal, when you’re in your late 30’s…..

More significantly than my birthday, it was the funeral of the cyclist that I wrote about a bit ago. As I’d said, I didn’t know him well, but the similarities between his fate and mine have made me think about him a lot. I caught 2 buses and headed to Putney, with Stella’s help. After half an hour, I realised I’d missed my stop, and was miles from where I intended to be, and already late. Another bus, and a trike along some very busy roads got me there eventually, although 15 minutes after the service had started.  The church had a step but the gentlemen waiting in the hurse got me up it, and in.
Theo had left London with 4 friends for a cycle trip in France for a long weekend, and didn’t live to see his wife and children again. Whilst pulling out on his bike to overtake his mates, he was hit by an oncoming motorcycle, and died instantly, along with the motorbiker.
His 18 year old son spoke first, his voice trembling and faltering. He made quite a few humorous comments about his Dad, though they were so laced with sadness that I couldn’t laugh at them.
Next his 16 year old daughter spoke. She is called Ellie. She spoke so maturely, with eloquence so beyond her 16 years, and conveyed regret that her GCSE’s had meant her seeing less of her Dad in the time before his death. She broke down a few times, but held it together for the hundreds assembled.
Then Ali, his widow, spoke – so lovingly and admiringly of her late husband, again laced with humour,bravely attempted through  her tears.

Situated at the back, I will never forget the sobbing figure of his 16 year old daughter, as she passed me, in the wake of his pall bearers, so obvious her abject distress at the loss of her Dad.

That 2 hours was the  most heartbreaking 2 hours of my life  I felt so profoundly affected by what I’d witnessed – such an outpouring of love for a man. You don’t get to witness your own funeral, but you do hope  that those there might have something good to say about you, I think.

I met Stella afterwards, and sheltered from the rain before going back to Chiswick.
We’d asked a group of lovely people to come to mine for a birthday celebration, though for quite a long time I couldn’t think of much other than the funeral I’d been to.
Thanks so much to those that came, for the gifts, for the goodwill and the love, and to Stella, Tamara, Cherie and Pia for all their prompts and help to get it to happen at all. It was a success.

I did something that I didn’t think I’d do the other day. I went on an internet date but declined to tell her in advance that I was in a wheelchair.

I don’t go on these dates expecting to meet my perfect woman, so I suppose I’m a bit blasé about how they go, but until now I’d always explain my physical situation, in case it was ( understandably ) completely off putting.

As it transpired, she didn’t bat an eyelid, and it was a laugh.

Perhaps she was very short sighted and didn’t notice ?

I had a visit from my good friend Chris this week too. He caught the train from the cuntry, all the way to London! He’s a great lad, and amongst other things sorted the welding of my broken Triride attachment.

I’m glad to know people like Chris Myatt.