I seem to be finding a growing peace in just sitting doing nothing. Which is undoubtedly, not very me. I know it has a lot to do with just how tired I am, but, to find pleasure in sitting in the middle of the living room in my wheelchair, rather than here, or on the settee, really isn’t me. After all, there is one thing that goes, without saying, it’s messy. It’s bad enough, that my wheelchair now sits tucked in edges of the room, all day long, but, for it to sit in the middle, with me in it, is a million times worse. I had just had lunch, and instead of tidying up, tucking my chair in it’s afternoon spot, I just sat there, being messy. It doesn’t actually matter where I am these days, I find myself more and more not rushing to do the next thing, I just sit for a while, doing nothing. Space has become a place I find myself contemplating a lot. Not the one filled with stars, just the one in front of me, directly in front, not even as far as the next object, just the space in between. I can’t even blame a lack of concentration, or my mind flitting off somewhere else, as I know exactly where I am, I’m just not moving, and the oddest thing of all, it really feels good. I wish I could explain it, beyond saying, it just feels right, or it feels good, but I can’t. I just seem to have developed a desire to do nothing, and whenever it happens, I always feel tired and it always feels so right.

If Adam had been at a home, there would have been no sitting doing nothing, I would have scurried around as always, rushing to tidy up and to get life on the move. Not that he would have been pushing me to, that’s totally not him, but I pushed myself when he’s here, why, I don’t know. I suppose, it’s like a lot of other things, you don’t want to appear any less than the person they met and married, despite the fact you clearly are. But Adam wasn’t here yesterday afternoon, he was at his families annual Christmas get together. So there I was, on my own on a Saturday and free to just let my mind and body do what it wanted, absolutely nothing. I had completed all my morning routine, and I had already planned my afternoon, something that wouldn’t start until I moved and tidied up after lunch. It is those transition points in my day, that I seem to find myself extending, pulling out every second so it expands over more than two. I know I can’t stretch time, but that’s how it feels, as though I am making time for me, to be anything but me. As if, by just doing nothing, I am resting, grasping those moments of wakeful sleep, that I can’t find anywhere else. My body has been running on empty for far too long. I have tried everything, from eating more, which has just made things worse, to making sure that when I am doing nothing, that it really is nothing. No fidgeting, no moving things because their not in their ideal spot, doing nothing had to be a total stop. Nothing has worked, I’m still tired. But yesterday, wasn’t going to be the start of my new life, it couldn’t be as last night was the final of “Strickly come dancing” and it didn’t finish until 10 pm, an hour past bedtime. There was no way, I was going to miss it.

No, I wasn’t making an excuse to ignore what I know is the right thing to do, I have sat through every beautiful minute of that show, and I wasn’t missing the finale. My new life pattern started this morning, but before that, I had to stretch my ability to stay awake. I had to find reset and I had to find energy, something at lunchtime, I clearly didn’t have. With Adam gone and the house eventually tidy and silent, I went to bed, with an alarm set for 2 and a half hours, doubling my normal afternoon nap. To my shock it worked, I actually slept, not even fitfully, or in a half dream, I fell into a deep sleep. Clearly, for once, my body was willing to play my game and not its own. For the first time since, to be honest, I don’t know when, I was sat here wide awake right through to the final seconds of the show, and it was so worth it. If I could sleep like that every day during the day, I wouldn’t have half the problems I have had for the past year, but it normally doesn’t work, and I’m not going to be tricked into thinking I can make it do so. In reality, I wasn’t going to get an extra hours sleep last night, but I was still setting the alarm for 8:30.

So here I am, at the start of a new life pattern and already beating myself up, for not being on time. I knew this would happen, but even knowing that, hasn’t made a single second of it any easier. I have been watching that clock out of the corner of my eye, all morning. Every time I have stopped and found that space, I have chastised myself and flown back into action, trying to make up that hour, that I feel I have lost. This is going to be the hardest thing about letting go and doing what is right. I know in time, I will get used to it, that I won’t be looking at the time, or the charter count, I will be once again relaxed and at ease with life, but that’s not going to happen today. Today is going to be super hard, and my body is going to make it even harder. My bowels have decided that running me back and forward to the loo is a good game, my bladder thinks so too. My dexterity is shot, and I am hitting all the wrong keys, meaning I need to correct almost every word and my legs, well they have just vanished in disgust of the whole thing. Who would think shifting your day by one hour, could be so hard. I keep having to stop, not to stare, but to relax, as my shoulders seem to have an infinity with my ears today. The tension in them is unbelievable, and its triggering pain in places that don’t normally bother me, not to mention the fact that my nicotine intake has doubled. I guess that you can’t take a lifetime of training and undo it in just a few hours. This is going to take time, and it’s going to be hard, but I will hopefully eventually feel better for it.

On of the hardest things to find within chronic illness, is balance. You have to work with your health, but you also have to have a life, getting the balance between the two, doesn’t happen overnight. I have rebalanced so many times, but I have never really tried to change it so dramatically. It is easy to cut chunks of the end of your day, that one I have achieved with ease over and over. I hadn’t had a bedtime of 9 pm since I was a child, but cutting back to it, was fine. Yes, I lost time with Adam, but it was equally the end of the day, that suited both of us best. Now, I think nothing of it at all, unless the TV, like last night, puts on something that watching a recording of, just isn’t good enough. There is, though, a point, where you can’t cut it back anymore, unless, you really don’t like your partner, and don’t really want to spend any time, with them at all. Cutting an hour out of the start of your day, throws you for the entire day! Yes, I can tell myself, that 11 am is actually equal to 10 am, but try getting your mind to believe it. Go on I dare you because before you know it, you are rushing once more, and your mind has tensed your body into a mess that you can’t untie, without losing more time doing it. Deadlines doesn’t contain the word “dead” in it without a reason. I know, I’m being hard on myself, but that’s me, not the messy, can’t move person, she is someone else and I don’t like her, so I have to make this work.

Please read my blog from 2 years ago today – 20/12/2013 – No words

It seems as though the house is getting colder by the hour, it feels as though the wind has been bustling past the windows and through the trees now for several days. It makes itself known whenever…..