Monthly Archives: September 2017

Thursday.

After using the arm bike indoors for a few days, it’s become far easier already.  Fitness is either returning, or someone has secretly reduced the resistance of my turbo trainer. 2 hours is now quite easy for me, but it is a bit tedious so tonight i watched a film whilst doing it. It was called The Circle, and was about the future, where nobody ends up having any privacy at all. Blimey, imagine the sights you’d see if you could watch anyone else that you wanted to at the press of a button.. For sure, there might be some ever so good bits too…

My legs seem to be growing muscle – that’ll be all the spasms then… they definitely look good enough to walk with, so it’s a shame I can’t.

I’ve used the iBot a few times – today i went out for a few hours in it. Socially, it’s far better as I’m 6 feet tall in it, so can get eye contact in the old way, without people having to sit down with me. I could have used it for the school visit, but didn’t actually trust my driving of it in a crowded room. I can’t tell if it goes over someone’s foot, but they sure as hell would…

So if you’ve got your flip flops on, keep your distance…!

Thanks to Jules for your time, and to Welsh Rick. And to Stella for her ideas and dedication.

And hi to Darren and Jo. 🙂

Tuesday September 6th.

Thank you to Jo for my birthday present of Tea at the Ritz ( no less ) – there’s posh for a Valleys boy. And after that Jesus Christ Superstar, at the Open Air Theatre in Regents Park.

When it started to rain, just before Jesus was due to be nailed to The Cross, the play was stopped. That was unpopular with the paying audience, though I thought it was Divine Intervention at work. Happily/ sadly, depending on your perspective, the crucifixion was resumed ten minutes later, once the rain stopped.

I had quite horrendous spasming all of the day, so  that took its toll on my concentration and enjoyment level of both events, but I of course can’t predict if or how much I’m going to spasm on a given day, in advance.

I attended a school parents event at Lily’s school this evening. For the sit down and listen  bit in the main hall I was fine, and not disadvantaged too much, but at the drinks and socialise bit afterwards where everyone else in the crowded room was standing up, I had no chance at all. I couldn’t move at all, because it was too packed, and I was completely excluded because I was at a completely different height to everyone else. I had one sip of my drink and then said about a hundred ‘excuse me’s’ as I wheeled out backwards to the exit.

Next time ( if there is one ) I’ll either skip that bit or hire a dwarf to come with me and talk to me while I have a glass of wine.

 

Today.

Today I arm biked at home on a turbo trainer. I devised a method of getting in, with a girder and a TRX suspension system, and a fair bit of effort by poor Stella. As I hang in space, she directs my stiff legs to the right place- not easily done at all!

Then I met my buddy Keith P, who has had an iBot for 14 years. Keith has progressive MS, and the iBot has made a vast difference to him all this time. He taught me all sorts of stuff today, and we went off together down Chiswick High Rd, both balanced on 2 wheels. The most bizarre thing was that not a single adult person showed any visible reaction as we passed – as though it was the most normal thing in the world to see 2 self balancing futuristic wheelchairs passing by. Has the world progressed so far that this now looks mundane?

After Keith said goodbye, I went to archery practice on my Triride, about an 8 mile round trip, but pretty fast for me. London traffic often goes slower than I do in my wheelchair.

Tired, I’m in bed by 9.30, my spasms regular. A hopefully half decent sleep might help me, before I arm bike indoors again in the morning.

Training in full swing..!

Sunday

The spasms did eventually stop, though seem to once again be a feature of my day/ night.

I do mentally cope with them better these days, I think since I have been taking antidepressants ( a month or more ).  Given my suicide on July 21st, antidepressants seem an obvious place to start with my ‘ management ‘ though to my surprise my GP practice is actually refusing to supply any, as they want some sort of paperwork first….. and the psychiatrist that I saw 3 weeks ago hasn’t got around to writing a letter, and neither has the hospital that received me from the Air Ambulance. Ive not yet received any sort of follow up at all from the NHS, despite being passed to the Crisis Team for their ‘ care ‘.  All comically bad,  isn’t it? If it weren’t for all the lovely mates that I have, it’s almost certain that I’d have topped myself all over again shortly after I almost succeeded 6 weeks ago.

I’ve visited my buddy in hospital every day since I last posted – he’s coming out tomorrow… which might be interesting. Fingers strongly crossed that it goes well. Today he was talking to me, and in the process started talking to me about me – except that he evidently didn’t know that he was, thinking I was someone else… thankfully he didn’t say anything too awful about me, to me. I hope you’re following all this?

Charlie P turned up the other day from Hong Kong. He lived with me in Cardiff Uni for 2 years, and we have had a lot of laughs together, usually at each other. He and Toby T helped me to adjust my arm bike back rest/ seat, to sit me more upright, and adjusted the head rest too. Today I went for a 20 mile ride with Sam, Dickon, Pistol Pete and Glenn. I was better than I was last week, not getting so breathless so quickly, which was a positive for sure. I’m way, way behind the aerobic fitness level that I was a couple of years ago, but I am going to improve. I’ll have to, as we go to Portugal in less than 3 weeks and I’ll need to ride around 100 km per day, for 3 days. I’m optimistic that I’ll be able to do it, though the guys will have to be patient, which they won’t mind, I know.

I had my first archery lesson yesterday. It was good! I was ok at it I think- apparently a lot of people are far worse, anyway. Pia opted in as well, though I’ll decline to say which one of us missed the large target altogether most often. I go again tomorrow for my second lesson. My instructor told me, laughing, that it’s still apparently legal to shoot dead a Welshman on a Sunday from the ramparts of Cardiff Castle, with a bow and arrow. I then mentioned that I am Welsh. He did stop laughing quite so hard, momentarily  at least.

Id like to thank everyone that I’ve mentioned, plus Cressida for dinner, recently.

Oh, and thanks to Rob for de crating the second hand iBot that I bought from America on eBay in November. Toby was first on, and was like a kid with a toy… and I tried it today. What an amazing thing!