Thursday, 19 January 2012

Blimey, that took a while!

January is over half way through and again a blog entry is long overdue. Having missed the Deep Purple gig in November, it was a relief to get to the Manic Street Preachers gig just before Christmas. The one off gig playing all 38 singles was excellent and quite impressive considering they played for over 3 hours with only a 15 minute break. The O2 arena was obviously chosen to accommodate the demand for such a one off gig and it looked pretty sold out but I don't think they suit arenas. They don't 'do' big stage shows like they don't 'do' encores. Fortunately we had got the front wheelchair platform so it still felt quite intimate. After, one of the stewards approached us as the boys were scooping up the thick carpet of paper snow (created by the confetti canon during the Design for Life finale) and throwing it over everyone. Instead of getting the expected repremand, he handed us one of the set list sheets from the stage; a cool souvenir which has subsequently been framed.

Christmas was fairly successful and probably one of the least stressful in recent years in terms of the 'morning present frenzy, afternoon overtired tantrums'! Also contributing to relative calmness was the boys choice of presents being primarily DVDs which require no assembly, no batteries and aren't tied down with 50 twist ties!

In fact I praised Daniel several times for his behaviour over the two days. He put himself in charge of 'present distribution' on both days, ensuring everyone had a present to open and didn't just tear open his presents, obliviously. A sign of maturity and associated selflessness or was there an ulterior motive at play; who knows but we'll give him the benefit of the doubt!

This year my family came over on Christmas Day and Tracy's on Boxing Day. My carer kindly agreed to come later on both days so I had an extra hour in the evening. Aspects of it are always difficult; watching Christmas dinner being eaten, being unable to go out, conversation, interaction with the boys etc. Nothing different to every other day but the occasion accentuates everything so it's like having my nose rubbed in it. Tracy and the boys went to see the Slava Snow Show at the Festival Hall between Christmas and New Year. I didn't go for the usual transport and logistical reasons. It's such a shit being unable to go to events in which I can participate equally with everyone else. The uncomfortable car journey is only half the problem. Equally difficult is any outdoor wheelchair journey in the cold; my body goes rigid and I get the shakes, both causing me to slide down and potentially out of my wheelchair.

New Year's Eve was spent doing the usual watching crap on TV and watching the London fireworks on TV from my bed.

So another year survived, roll on 2012. Despite the difficulties, I still like Christmas and always feel down at the beginning of January. This year it's been compounded by such a long period of being confined to the house. The daily routine has been reduced to 9am to midday - getting up, midday to 4pm - sitting in bedroom on computer, 4pm to 5:30 - carer is here, 5:30 to 9-30pm - watch TV in lounge then bed. It's pretty mind numbing after a while but I don't think there's much alternative. The combination of a life limiting illness and a few quid in the bank should be the recipe to living life to the full, the perfect scenario to complete one's 'bucket list'. But in practice, it doesn't work like that.

Moving on, the boys are progressing with their respective instruments although I think we are some way off their next completed song. Here are some recent (but probably not their best) performances.

Daniel had his class assembly today which I went to. The subject was 'heroes' and Daniel read out that I was his hero. It took all my effort not to cry. This is what he wrote;

With last year's efforts to improve the car's suspension being largely ineffective, I am now looking at a replacement vehicle. There is a company which specialise in vehicles where wheelchairs can go in the front where the ride should be considerably more comfortable. It will have to be a big improvement to justify the £10k cost to upgrade from the VW. Obviously I use the term 'upgrade' very loosely as it's hardly a step up from a VW to a Fiat Doblo which will see it's residual value freefall from day one. As I said it will need to be good