Wednesday, 30 November 2011

pissed off that I am going to miss deep purple at the o2 tonight because I have got a chest infection and feel completely crap .
Everyone has just left for tonight's gig, I am so pissed off that I am stuck here. Annoyingly my cough is much better than yesterday but I am so tired after not being able to sleep last night. Initially only Jake was going to go, so I was planning on watching GI Joe with luke and daniel. But they all decided to go, which I am pleased for them about but I feel very left out. My chest infection and fatigue wouldn't have stopped me going; it's this f***ing disease which has f*** ed up another enjoyable event. I am so sick of it.

Friday, 25 November 2011

on a more positive note

The boys stole the show at their school's Thames Ditton's Got Talent show. Luke did particularly well keeping it together when his bass drum tried to escape halfway through the song. Unfortunately the school copped out on having a winner, but instead picked the best 4 to perform at the school Christmas fair on Sunday. A little unfair having worked so hard, but the audience reaction was fairly conclusive.


Wednesday, 23 November 2011

Battle Weary

I am really struggling with food at the moment or rather the lack of it. I haven't tasted anything other than toothpaste for 18 months now but for the last few weeks it's been particularly hard. Smelling cooking in the house and being near people eating aromatic food is really getting to me. In the scheme of things its actually fairly low on the list of losses; if I could regain something, speech, walking or the use of my arms would win every time but for some reason the inability to eat anything is frequently pissing me off. I am regularly tempted to get something pureed and attempt to eat it; how difficult can it be, I keep asking myself. But when I tried it a year ago, I ended up coughing and spluttering everywhere and it won't be any easier now.

The latest problem is waking up with mucus having accumulated on my chest, presumably from saliva being aspirated during sleep. My cough when lying down isn't strong enough to dislodge it , so I am worried that it will lead to a chest infection which would be seriously bad news. There is something called a cough assist machine which I guess I should investigate although it wouldn't help at 4-30am without someone to operate it. I have already given some thought to overnight care which I can't see anyway of avoiding when I start using ventilation, but it seems somewhat excessive at this stage. But this ineffective cough problem has been occuring for a week so I know I should tackle it rather than waiting until I get pneumonia.

My apathy for arranging yet more equipment and care is probably symptomatic of my often prevailing 'determination fatigue'. Being confined to inside the house by the cold weather doesn't help and the longer it goes on, the harder it becomes to make the effort to go out when the opportunity arises.
As I mentioned in a recent post, there hasn't been any dramatic changes this year and I imagine that the subtle changes aren't noticeable to anyone else leading them to think 'Steve's doing OK' and compared to the friends I have lost this year, I am. But life is far from OK, the immense effort to do anything other than sit and stare at the TV is slowly crushing me and the frustration experienced when eventually no amount of effort is sufficient to achieve something is soul destroying. Two months ago I would spend 45 minutes trying to turn on my side in bed, sometimes succeeding, others not. Now I have to lie on my back all night. I sometimes have to literally will my hand to move my hand 1mm to turn the wheelchair. But increasingly my carer has to drive me. It's so hard maintaining the will to fight when defeat has to be accepted constantly.


Monday, 14 November 2011

Netic's Debut Track

This is the boys' own song which they will enter and hopefully play at 'Thames Ditton's Got Talent' next week. They would love to get loads of Youtube hits so please share this link


Thursday, 10 November 2011

Red Hot Chili Peppers

Last night we took the boys to see the Red Hot Chili Peppers at the O2. It is a long time since we had seen a band that we hadn't seen previously but I think that they are one of those bands that any self respecting rock fan should be able to tick as 'seen' on their gig bucket list!

I had been dreading the long journey to the venue and had been agonising over which wheelchair to take; the indoor wheelchair with bone shaking, back jarring potential or the comfy off road chair which is very difficult to drive, having not used it for probably 2 months. There are numerous other factors for and against both wheelchairs which I won't bore you with but I decided on the bone shaker.

The journey through rush hour traffic took over 2 hours and wasn't helped by the Tomtom which was hell bent on shaving seconds off the route by taking "shortcuts" down speed humped residential streets! I appreciate that for someone with no knowledge of the area they have no option but to follow the instructions but it drives me nuts. And worse still is that an entire generation is growing up without the faintest clue how to get anywhere beyond their local shops. I am not advocating that people should have conversation boring levels of knowledge ("if I were you geoffrey I would take the B5479 to avoid the dog leg junction on the B5476 near Buttocks Hole") but knowing the M11 won't get you from London to Cardiff very quickly is quite useful if your sat nav is having a mad moment.

Anyway, having left early we arrived in plenty of time and thanks to the traffic speed and Tracy's navigation around pot holes it wasn't too uncomfortable. Tracy's brother had again managed to get us into the VIP parking area which is right next to the venue, helping me greatly. I am going to write to O2 asking why disabled parking isn't situated here instead of within the main car park (resulting in it still being several hundred yards from the arena)

The band came on at around 9 and we were grateful for the boys being issued ear defenders because despite being at the back of the arena, it was LOUD. In the circumstances, not being able to get wheelchair spaces at the front (you are only allowed one accompanying guest or carer, another point for my letter ) was probably fortuitous. I guess my concerns about the travelling had prevented me looking forward to the gig but within a few minutes I was enjoying the music as much as the relief of having got there! They played tracks from the new album and plenty of older hits (all fully clothed; I had told the boys about their previous stage attire comprising of nothing other than a strategically placed sock)

They sounded fantastic and hopefully illustrated to Daniel that bass players don't necessarily have to be in the shadow of an egocentric lead guitarist. The Chili's bassist, Flea is claimed to be one of the world's best and its easy to see why. He is apparently also an accomplished trumpet player, so Daniel may be on to something!

They played for an hour and a half which I think is a little lightweight but it was still a great gig, although Anthony Kiedis really should rethink his Phil Oakey meets Hitler look. Jake and Daniel seem to enjoy most of it but Luke was less enthusiastic, hopefully they will have good memories of it.

The trip back was under an hour and although far from comfortable, it was bearable and I will hopefully be a little less stressed about our two remaining gigs; Deep Purple in 2 weeks and Manic Street Preachers just before Christmas. We are particularly looking forward to the Manics as it is a one off show celebrating 25 years since their debut single and they will play all 38 singles over 3 hours. And we have wangled wheelchair spaces at the front of the arena!

Friday, 4 November 2011

Tori Amos Gig

On Wednesday we went to the Royal Albert Hall to see Tori Amos. Have have been a fan since her first album around 20 years ago, and although I am less keen on more recent albums, she is still a fantastic singer, pianist and performer.

As usual I was stressing about going; which wheelchair to take, surviving the journey, getting between the car and venue etc. Having still not tried the car with the new suspension, I had decided to take the more comfortable outdoor wheelchair. But having completed the lengthy process of transferring me, computer and feeding system, I discovered the batteries weren't charged. And before you think the same thing as my carer said, I had checked before but... Charge indicators on wheelchairs are pretty hopeless. Firstly, when the first of six lights goes off you haven't used 1/6 of the charge but around 70%. Secondly, after charging a flat battery for just 30 minutes of the required 8 hours required, the indicator on the wheelchair will read as full then rapidly fall when the chair is used. And that is what happened so everything had to be transferred back and I just hoped I wouldn't be shaken out of the wheelchair en route!

The journey was predictably slow through rush hour traffic although that meant less bouncing around for me. Our seating position was excellent; close enough to feel part of the show but far enough back to have the best sound (and not be distracted by the rather disturbing results of excessive botox and shocking plastic surgery)

The performance was excellent as usual. She had a contemporary string quartet accompanying her which were amazing in their own right. The setlist comprised of a few too many obscure songs but there were enough favourites to keep us happy. Tori Amos has always had more than her fair share of obsessive fans so there are frequent and rather cringe worthy whoops of delight to certain lyrics or gestures. She played for 2 hours including both encores, one of which included 'Winter' which has always been one of favourite songs from any artist but recent events have made its words very poignant and emotionally charged. The first time I played it after being diagnosed it reduced me to a sobbing mess and I simply can't play it anymore. On Wednesday I managed just about managed to hold it together although a couple of tears still escaped.

If you haven't heard it and have 5 minutes, have a listen

The journey back was pretty quick but very uncomfortable. The route through Fulham and Putney has terrible roads and obviously without the traffic we had been slowed up by earlier, I started doubting whether the suspension modifications had really made any difference. I was really wiped out by the time we got home and wondering how I was going to cope with the three much longer trips to O2 gigs between now and Christmas.

But it was a good evening and a very enjoyable.