I am sure you will all know the experience I have just had, one of those showers were the purpose of getting clean vanished to be replaced by it’s sheer enjoyment. It’s strange how things like that happen at times, an everyday act that suddenly changes into something else, everything is just right and you are taken off to another place were the chore no longer exist. Just standing there letting the hot water wash over me was a sheer pleasure, that there was a temptation to stay there longer than I should. I doubled my usual time and enjoyed every second of it. Adam and the district nurses don’t like the fact that I insist in showering when I am a lone in the house, but it is one of those things that I have maintained as private time, no interference and no feeling that I have to do it when told, rather than when I want.

If you have a chronic condition I expect you will understand that feeling, but those that don’t will probably be firmly on Adams side, I can see it, I’m not mad yet. Safety is one thing, independence is another and I, like so many things in my life, form a balance between the two. As I point out frequently I know when it is safe and when I am just being pig headed, for example I stopped climbing ladders when I knew my balance would no longer allow me to, it had nothing to do with the million times that I saw the shiver pass through Adam when he realised what I had been up to, it had everything to do with choice. The word ‘self-determination’ are more frequently used in connection with the free choice of the people of a country to be governed as they choose, I and many others take that world further, that an individual person should have ‘self-determination’ when it comes to how they wish to lead their lives, that basic acts of showering, eating, sleeping should be at the individuals choice, not when a carer can be allocated to do these things for you. There will be a point when I will have to accept that the choice has ended, as unfortunately when carers are required, those cares are looking after so many that it has to be on a planned system so that all are helped, but I am still capable and I should be allowed to be so unchallenged, until I ask for help.

Disability heightens the importance of self-determination, no able bodied adult would want rules applied to them, that they have to follow, for no good reason. My determination to stay in control I am sure is one of the reasons that I am still as active and together as I am. In an ideal world there would be on carer allocated to one patient and they would be with them not just as a carer but as a companion, enabling that person to live a full and productive life, cost makes this impossible. I have realised lately that I should write much of what I want the future to be down, so that those who are responsible for my care know, as I may not be able to tell them myself at the time. I have a horror picture in front of me of being eventually being in a care home and being forced to sit in the main room were there is a sing-song or a bingo game going on, that is my idea of hell, I can’t imagine being unable to tell them and that I would rather go to my room on my own when things like that are going on. That is clearly just one of many things that I have strong feelings about, but a detail care plan written by me and lodged with my Dr is probably one of the few ways I have any chance of a future with a degree of happiness.

I have already looked on line for a formatted structure, without luck so I am going to have to put one together by myself, once I have it sorted I will post it but don’t expect to see it soon as I want to get it totally right first. I have planned my life so far and care so far and found my route to happiness, I want that self-determination to the end.