Wednesday, 12 June 2013

I Know ...."It's about bloody time.... "

Well it's been absolutely ages since I updated this and I expect most of you have stopped checking so it might be Christmas before you see this. To be honest not much has happened since the last update.

The most noteable thing is the completion of a garden log cabin to give some space for the live-in carer. The first live-in carer started mid May and got upto speed very quickly, the second carer started last week but has struggled to cope with everything and we have mutually agreed to part company. The agency, Enara, have been their usual incompetent selves during the process having allowed completely inadequate training time thus setting the carers up to fail. Of course the agency blame social services for not approving additional funding for more training and heaven forbid that Enara cover the cost themselves. Instead we now have to start all over with a new carer. The shortsightedness is staggering

I had another week's respite break in Princess Alice Hospice at the beginning of May to give Tracy some space. I arranged the break in February in case the care home respite breaks weren't in place. It proved wise because they weren't arranged, and still haven't been. It's incredible after the force in which social services intervened last December, that the core facility which might prevent another crisis point being reached, has progressed literally nowhere. It just confirms my opinion that much of social services is more about meetings, ticking boxes and arse covering than actually helping people.

Anyway the cabin looks great inside and out thanks to Tracy's considerable efforts and at some future point will be used for its original purpose of a place for the boys to have friends over.

The lowsy weather has prevented many excursions out and I only managed to sit outside during the last couple of weeks. Really hoping we don't get another summer like last year. I a doing ok although I have had long periods of feeling very down, but in terms of MND progression, nothing's changed significantly. But I have had some harsh reminders recently with 3 acquaintances recently losing their battles. The first was Alistair the Optimist, who produced his own album last year. The others passed away within a week of each other last month, all in their 40s.

To end on a brighter note, we are looking forward to our cruise in August which barring more exploding oil storage facilities should be excellent. And finally, those of you on facebook will already know I am sporting a new look. So for the rest of you here it is.

I am still unsure about it but it was done for purely practical reasons because the skin under my chin was being rubbed raw by the chin support. Here are the rather alarming results of my mate Chris' effort in Photoshop