As ever Christmas has completely wiped me out, I feel really ill and in pain and don't know what to do with myself, I want to sleep for weeks, but not an option as a) I don't sleep well and b) life goes on regardless.
Christmas was very hectic and I had little help or support, much less rest than I needed and ate many things that disagree with me all in the name of keeping people happy! I tried most of the time to grin and bear it and be happy and join in, but it wasn't always possible. I tried my best and tried too hard and always pay the price. Being away from home is difficult and means I have little left when I return home which is when Emily needs me most as there is no one else around, I feel like I am really unfair to her and I feel like I get my priorities mixed up, pushing my limits for others, who much of the time don't appreciate it and then having to say no to Emily.
New Year is always a bad time, it marks another year of being ill and nothing much changing, another year of wanting to do things and wanting to make plans, but knowing I can't do them. Hoping this year will be better or different, but knowing its unlikely. I always have so many things I want to be able to do to feel more productive and more normal and feel like I make a contribution to the world.
Following my assessment by social services yesterday, it is likely that I will lose more of my support from what she was saying rules have been changed so that we can't employ people in the way that I do, so it will be down to whether her manager ok's it or not, if she doesn't there is no way around it and we will have to stop claiming the money and get rid of the help as we can't meet the criteria they set. They have realised what they set up is not doable any more and have changed the rules so that people will not be able to claim and will either have to go back to their care packages or go without. and to add to that DLA is being scrapped and the criteria for new benefit have changed so can't get things like motability car and blue badge any more, my needs haven't changed at all it the criteria to make everything more difficult. These payments ate suppose to allow people to be as independent as possible and it is all been taken away.
I am going to stop now as I don't want this just to become a huge moan, I need to refocus and think positive, but its hard with little support and when feeling so worn out and ill. There is not much point feeling sorry for myself and feeling that I am being picked on or treated badly, rules and attitudes can't be changed, I just need a while to get over the festive season and then think out how to carry on.