One day on and going backwards

Adrenaline is such a bitch! Despite having a night with almost no sleep, the best I could manage all day was to lie in my bed and worry. I quickly worked out that distraction was a far better option, so it was back to playing card games, and telling myself, how good I am at Sudoku. There is a small truth though hidden in that, distraction only works so far, and without reason, well not one caused by what I was doing, I found myself weeping for what felt like no reason. As the hours clicked on, and the time of my fate grew closer, the adrenaline kicked in harder and harder, By the time my first ever outside carer arrived, Jane, I was wired and shaking. I had flown into let’s get this over mode, one that I am sure made me appear manic and over the top.

I had planned out just how I wanted to go through this torture, every step was worked out and every item, placed just where I wanted it. I knew that this, and the next few weeks, are about learning for both of us. I say weeks, as I have two carers allocated to me, each visiting me for a week, then they change over. I found myself flying in a way I normally never do, and at first, I was sure that she was confused as to why she was here at all, but it did slowly appear. Undressing was oddly the easy bit, I do normally manage my clothes, but I thought that my embarrassment of my body, would get in the way big style. Before I knew it, I was naked and on my way into the shower. With my hair washed and the conditioner laid in big style, as I hate those knots that washing used to cause, it was then that her job really began. As soon as I stood to let her scrub the entire back of me, I found myself out of breath and with a huge desire to lie down, I was suddenly on empty.

She had been in the house for less than 20 minutes and I was still shaking all over, trying to talk without breath and wanting to start crying again. Both my body and my mind had had enough. I had no choice but to keep pushing forwards, but I felt like a wreck, stuck inside a person who had to do what was needed. Jane was great, she chatted with me and took me through all the things that I needed help with, but I had in many ways receded inside me, what she was seeing was pure bravado, but I’m not too sure if she could see through it, or not. To be honest, withdrawing, was the safest place for me, I felt safer, less set upon and if not in true control, at least letting it all pass.

When she left, I felt so odd, sitting in my wheelchair, clean and with Adam due home in less than a half an hour, but I was numb. I think it took me almost the entire evening to even find a tiny part of me, I wasn’t there and I’m still not sure where I was. I guess yet again, that I was just going through the motions, doing what I always do and heading my way to bed. We did chat about it all and even went over some of what had been said the night before. If there is any good at the minute, thanks to this, it has opened up what had been a not closed, but somewhat squashed channel between us. It is so easy to just go through the motions of life, to hide those raw things that we feel safer not talking about. It doesn’t matter how much you love each other, or how close you are, we all move into those safe positions. There is a fact that can’t be ignored, we can’t talk about my health and how I am emotionally all the time, so like everyone else, we just live. We talked, but it was only on the surface, touching the facts, not the depth of the feeling.

I slept that night like the dead. Not once did I even rise to go to the loo, sleep consumed me and I was more than happy to let it. Even when the alarm sounded, I was so deeply gone, that it took me a full hour to be able to get around to breakfast. My tremors are running wild and even now, I am still weepy. How this has destroyed me so much, still evades me. I feel like I am still somewhere that isn’t safe and I am not safe to be here. Don’t take that wrongly, there is no physical fear, it is more a fear of my health than anything else, and that’s something I haven’t felt for a long, long time. I haven’t been this raw, for so long that it feels like a totally alien emotion. I thought that when I woke, I would find myself at the start of that healing process, when the grief of what has happened to me, would have lifted to a level that meant I could live as me. Yet I am still in the depths of a very large black hole. If my body were in a stronger position, I’m sure that I would be feeling more in control of myself, it is just that everything has been piling in on me for weeks. Somehow, I have to find a way to break this and I am sure that what I need more than anything, is to find rest and a touch of normality in my life. I will get there, I know, but right now, I’ve just had enough of feeling like this.


Please read my blog from 2 years ago today – 10/06/2014 – Body rush

I seem to be suffering from brain overload today, a thousand thoughts about a thousand things and most with no connection to each other at all. It’s not new, it’s something I remember since childhood, a desire to know why, what, and who has been a constant companion, which considering the fact I have a condition that there are no answers to, is either a good thing, or a total nightmare. Questions race……