At times, probably because of the memory problems, I find myself sat here without a direction for my writing. At one point I had a list of things I wanted to write about but I found for me that that didn’t work. Writing to a list either caused it to feel flat as I didn’t have the passion of the moment behind it or I found that although I had the subject I couldn’t find the words that day, possibly part of the passions thing. When you are writing about yourself it is hard not to put things down in words that make you sound a better person than you are and that is something I am not. I am no angel and never have been, but I am not a bad person either, well I don’t think so, what I am is just a person. That was part of what I was trying to say yesterday, the scariest part of any illness like mine is loosing yourself. I have often wondered how it is to see what is happening to me from Adams eyes, after all he sees it, I live it and they are very different things. I can only fill in the gaps in what he says on the odd occasion when we talk about it, it is then that I see and feel his pain and that hurts me badly at times. We all want to protect our partners and I can’t protect him from having to watch, and neither of us can protect me from going through it. Chronic illness becomes this huge ball of feelings that neither of us want to unravel, as if we do it will hurt too much.
Dealing with your own feelings can be incredibly difficult but when you are constantly trying to protect another it can become impossible. One thing I have noticed is that it really is important for us to have time to ourselves away from each other. Adam going to work supplies this perfectly. During those hours I have the space needed to allow me to get upset or try out ideas, do things independently without him fussing, like my most dangerous activity, having a shower. Carers can’t stop doing one thing and that is caring, with all the best intentions on the planet it can be suffocating at time, even when I am clearly in a lot of pain getting up and going to the kitchen and back may be painful, but at times it is also essential. Not for a physical reason but for the simple reason that ‘I need to do it’. It is probably one of the most difficult thing to explain as well, those ‘I’ moments. The best I can think of is one that parents see with their children. When they are learning to walk a toddler at some point has to do it by themselves, they have to stand without help, there is a joy in their eyes when they first do it, they are independent of help, they have an ‘I’ moment. It isn’t a one of thing either, as you know at times they still want your help at others they do it themselves and get angry if you help, each time they do it when they want to is another ‘I’ moment. In someways doing silly things for yourself regardless of the pain or effort are needed, those moments when I confirm to myself that I am still there and there are still ‘I’ moments. Frequently help is needed and I am grateful for it, but at others I need to do it myself without help. It isn’t that I am trying to be difficult, or bad tempered, but I need independence to do silly things at silly times, when I want to be silly.
It is hard thought I know for Adam, he doesn’t know when or when not to offer help and when or when not to finish my sentence, the wrong reaction from him can result in my snapping at him and getting angry inside. If he does nothing and lets me get on with it and I actually need his help, well he also knows I don’t like asking for it. There are days when I wouldn’t want to be him, as I know he must feel he can’t do right for doing wrong and I fear those days will increase as I slowly get worse. As I said at the start, being a carer can’t be easy and I have just scratched the surface of it, as, well I am just scratching the surface of the help I will need.