Another Day In My Life!!

Well as the heading suggests, it has been just another day in my life. I spent the day at “New Horizons” in Barry which is a Day Centre for Physically Disabled People. My social worker had mentioned it some time ago as she felt it might help to integrate with other people in a similar position to me, she must be brave letting me loose on the poor old people there, what was she thinking?? Anyway I went a few weeks ago with Judith to meet with some of the staff and have a general nose around to see what was on offer and after that it was suggested I visit for the day to get a real picture of things. I think the swaying decision mind you was when they mentioned that they provide good “Home Cooked” food and at such a low price too £1.85 including all the Coffee’s during the day too. I met up with Sue who I think I’m right in saying is the Manager who is lovely and she set about introducing me to everyone. I must just point out straight away though to those of you that have dropped in to see what it is all about, as I couldn’t miss an opportunity to publicise my blog could I? I am dreadful with remembering names so the chances I will mention you by such are pretty slim. This however will not last as everyone gets a mention sooner or later on here as the other poor devils will tell you. I felt like a little boy on his first day in high school, in a strange area where I didn’t know anyone, but all the staff and clients made me feel really welcome and spent lots of time getting to know me. I seemed to sort of hit it off with another guy called John who even I can manage to remember his name ha ha!! and spent a lot of time putting the world to rights which as you know is one of my favourite hobbies next to harassing MP’s and Consultants, Social Services, Local Councils etc etc etc. There was a number of activities on the menu for the day such as Relaxation Classes and Massage and a sort of Keep Fit and also Bingo in the afternoon but I decided that I would sort of just chill out and generally try to get to know people a little which was really useful. Dinner was gorgeous. I had a lovely piece of Ham and Mushroom Quiche and lots of nice salad made by the resident Nigella Lawson called Debbie and look forward to many a hearty meal to come in the future. The plan at the moment is for me to try and go one day a week although things may change I guess in the future depending on needs and available space I guess.

Health wise things are changing somewhat at the moment. My chest is generally behaving as badly as normal for me although it is being kept at bay by various pills and potions and some heavy will power but I am becoming increasingly worried about the skin problems. My legs are very rapidly getting a whole lot tighter and quite painful at times. There are a number of areas that are now very distinctive rings of tightness round them sort of like as if you put a 1 inch wide elastic band around your leg if you see what I mean. This is causing some pretty nasty swelling in my ankles especially my right foot somewhat caused by the water retention from taking the steroids. Both my legs are now so tight and the skin is so thin due to the GVHD that I am discovering more and more burst blister like things which eventually turn into ulcers and then pretty much do not heal because of the drug interactions yet again. It is getting to the point that I am going to be permanently in a wheelchair and not able to do even the smallest of walk, some 6ft which I have been managing to do until recently. The other main concern I have too is how long before my other enjoyment in life “Driving” is taken away from me too by this bloody illness. I will have no choice in the end because even I am not stupid enough to put other people’s lives let alone my own at risk by driving when I am not capable off doing so.

I am hopefully going to get some news on the Treatment of the GVHD when I go and see Merlin on Friday but then again I have learnt not to expect anything anymore that way I am not so disappointed when things don’t materialise. That’s sad having to think like that I know but after having so so so many let downs there is no other alternative.

Right I’m off to install this new copy of Fedora 6 to have a play around with. It’s all Peter’s fault for putting the thought in my mind. Okay fingers crossed.

See Ya!!