Hello out there

Jake was round here again yesterday as over the weekend I had won another symbol that he wanted of Ebay and it had arrived. Last week it was a 16 inch china and yesterday a 20 inch one, I am so glad I am not his neighbour even though he is a first class drummer, who swore 10 yrs ago that he would never pick up a drum stick again. I think his new kit is bigger than his old one, well they do say never say never, and I didn’t believe him when he said it anyway. He stayed for about an hour again and again when he left I was tired and felt totally like giving up and going to bed, but dinner and an hour of doing little I felt a well enough to make it through the rest of the day. It is strange out people drain our energy, not the our as this is one I have heard again and again from other people. I really think it is because we try our hardest to be normal and to talk with out stutters and gaps, which takes more out or you than you might imagine.

I have for a long time now avoided speaking on the phone to much as that is even worse, at least when someone can see you if you are struggling they understand, but go silent on the phone and they then try to finish what you are saying, or move on with you then stuck with this half said thing still running around your head, but also trying to move with the new conversation they have started. That is hellishly hard! I all to often get lost and find not only that I don’t know what they are saying but I have no way of knowing what to say next. There is something really difficult in just talking to someone that I can’t see. Which considering that I was a sales person for years and sold on the phone, just shows you how mad this illness is. Here is a person who was a DJ, not just the continual music sort but also radio, and then spent years selling on the phone, that to find myself sitting with a phone to my ear, hearing but unable to get my brain to take it in and to respond is just too confusing and too difficult to deal with. Avoiding it isn’t always possible and often I actually want to talk as I did last week when Teressa called. It is a bit like I have lost the coordination required between hearing, understanding, responding and initiating, all these different parts happen, but in all the wrong order. Add in the distraction factor of having a TV on or a PC screen, and there is the perfect disaster scene, so I sit there stuttering, blanking and feeling like I am being tested beyond my capabilities, and it is just a phone call.

I suppose that is how a lot of things feel at times, like I am being constantly tested, constantly expected to be able to do what is just too much at that moment. I often feel terrible in the evenings when Adam want to talk to me about something, but I am sat there hunched forward leaning on my knees as I have some relief to my stomach discomfort, or straight back with my knuckles sticking into my spine to ensure I am upright. My mind is struggling to deal with my body and to watch a TV show and the conversation at times is the one factor too many. I want to listen to join in and to connect, he is my husband after all, but sometimes I can’t. I’m not ignoring him, I am just lost how to make sense of things, my mind can’t find the response or I am lost in his words, almost as though I only pick up every third or forth one, and I have to do the work of bringing sense to it all, I am hearing all the words as in the sound reaching my ears, but the words aren’t all reaching my brain. Through in the emotion of being lost and the fear of not being able to deal with a simple thing and the result is, I get more and more lost and answer in ways I know are stilted and not really what I as the total me would have said.

Sometimes it is a scary place to be, we all expect our brains to do what it did yesterday, to find it can’t do what it did when we were a tiny child, is scary, and there is nothing I or anyone out there can do about it. I am slowly being locked inside my own mind, by my own mind.