Dear Blog,

A female carer who gives me a good wash discovered I have piles! I am waiting for a test but whether I can have the test whilst with piles remains to be seen. I wonder what on earth this now means.

 With Social Services, I’ve had another phone chat with them, but whether I will get the assessment I have asked for in the next couple of weeks remains very unclear. I am on a waiting list to be seen is all I currently know.

 I had another call but I am rather confused by it. The woman from my local CMHT spoke to me, and again stated that I had “refused counselling” as the reason they would not now give me any. When I, yet again, said I hadn’t, she said I wasn’t suitable because I was too “angry” . But if I wasn’t suitable because of anger why would I have been offered it in the first place!? Also I had asked for a joint physical and mental OT assessment of my showering needs because I have both difficulty getting into/out of my bath, and because I have always felt the need to shower for over 45mins. She mentioned OCD but that I would not be getting a joint assessment, in fact nothing to assess my shower needs from the mental health team at all. But in Preston, my previous male Care Co-ordinator said that I should have one so that I could get the right shower and shower facilities. As the mental health team here are not willing to give me a Care Co-ordinator where I now live, + I don’t get to see my main named consultant, and his junior changes every three months, there is no way I can build the `theraputic relationship` they keep talking about. There is no one person I can talk to about my ongoing case as a whole.It was also mentioned that my MS nurse had not attended a previous meeting whereat my case was closed. I pointed out she was probably busy and just because other people wouldn’t attend the meeting advocacy was now involved and we should not give up, as my very complex situation continues to worsen.

 On a brighter note. I went to an organised bonfire and fireworks display yesterday evening. There were stalls there and the first one I went on was `Hook a duck`which was a bit different in that the ducks were in a small paddling pool. I won a toy monkey for me and a small piano for the children next door to make them smile. I bought a couple of home made cakes – yum yum – and had my face painted in a number of colours. Why should only children have all the fun and have their face painted. The bonfire was very good but smaller than last year, but crackled away into the air. A bit later the main fireworks began, the main colours being red and gold, with various whistling sounds. I said to my carer that we must definitely go again next year 2012 if she’s not on holiday. I had a really good time, recharged my batteries and felt happier and settled with less sadness.

 Life is for living, not being stuck in the four walls. I will never give up willingly what very little quality of life I’ve got.

 That’s all for now folks!

 Lydia