I have this strong feeling that I have missed something today. You know that feeling that sits in your brain annoying you, niggling away telling you, you haven’t done something, but refusing to tell you what it is. It used to be something that just happened from time to time, one of those things that happen whether you are ill or not, but then it grew and grew, suddenly it was a close and very annoying friend. At times, it is like a big black hole that swallows my entire life and then laughs so loudly that I am left feeling incredibly stupid. How can you forget what you do everyday normally without thought? It’s favourite one is to leave me standing in the kitchen looking at a pile of tablets and shouting “you’ve got it wrong again, something isn’t there”. I wouldn’t mind if it just taunted me for a few seconds then gave me the answer, but it doesn’t. I actually dared to believe that I had won that one, beaten it into a corner with a fail-safe system. I don’t throw out any empty pack without taking a fresh one from the cupboard. It seems thought that it is clever than me. Somehow it throws it out the pack without me even seeing it doing it, as though my brain wasn’t there when I did it. It breaks my rules and sniggers quietly until I eventually realise what it has done and then it laughs. There are honestly many times almost every day that I truly hate my brain. I know that you are supposed to do nothing else until you do remember. But when you find your brain has gone on vacation, there is a limit to how long you wait for it to return.

I found myself this morning, staring into the medicine cupboard in the kitchen with no idea what I was looking for. I stared a little longer then closed the doors with disgust and gave up. 20 minutes later, I remembered I was supposed to be looking into the fridge for my breakfast. When I can’t remember that hunger requires food, how on earth am I supposed to work out how to build a new life that takes account of all the things that might go wrong in the future. I have only been up two hours and I am in a mess already. The last few days have been odd, my energy levels seem to be all over the place. I can go from fine to exhausted with a speed that even astounds me. My afternoon nap is no longer set by the time, but totally by my body. I used to go to bed between two and three o’clock for a couple of hours sleep, frequently I didn’t even feel tired, but I slept anyway. My nap was more about having the energy to stay awake for the rest of the day, not because I was tired at that point. That has totally changed, now I am going to bed because I have absolutely no other choice than to do so. Today is a good example, I have only been up for two hours, after having a full ten and a half hours sleep and yet I know without any doubt that if I were to lie down now, I would sleep. This isn’t the drawing feeling of fatigue where you body is exhausted but you brain is alert and won’t let you sleep. This is my entire body, including my brain, longing for sleep. I have been desperately trying to hold onto the idea that this is just another phase of tiredness, but I was lying to myself, this is a totally different feeling, phases are alway fatigue.

You would have thought that by my age, I would have stopped trying to kid myself when something isn’t right. I don’t even understand why we do such a strange thing as we all know in the back of our minds what the truth is. Yet we all go on blindly doing so, happily playing games and pretending to the world and ourselves that the world is a wonderful place and everything in it is perfect. Just as we all also know that at some point the truth will be out. Probably the silliest thing about lying to ourselves has to be the way that we put on an extra sunny face to others. It’s almost as though if we can kid them, well kidding ourselves suddenly becomes a valid thing to do. Life is so full of games, rituals and expectations of how we should behave that I sometimes wonder if any of us actually live totally in reality at all. If there is one person other than myself who I know I can be totally truthful to is Adam, yet still I pretend and still I smile through what maybe I shouldn’t. My bubble of self-preservation seems to have extended itself to also include him. I guess it is just easier to keep saying “I’m OK” over and over in our own minds, than it is to sit down and be honest not just to others but to ourselves as well.

I know in the last few weeks I have been dropping hints, clues to the truth of what is happening to me just now. I have unwittingly picked subjects to write about that shouted “hello, the truth is sitting here between the lines”, something I know at least one person picked up on. I know that it is both a healthy and an important thing to stop every now and then and reevaluate your life, to look at where you are and where you are going, as it is something I have spoken about before. This though is slightly different, this isn’t about happiness or about taking a dream and making it into a plan, this is a reevaluation on a much deeper level. Yesterday, I took the step of saying that pain control is now more important than having a clear mind. Today isn’t that dramatic, but it is the baseline for everything going forward. From here on, if I am not sure of anything the question has to be, “is this a positive thing for me?”, I know that sounds selfish, it’s not meant to be. I am not going to stop taking the needs of others into account, but I feel that I am at a point with my health that everything has to be measured and that will be my measurement. For example, if I am so tired that I feel the need to sleep, is pushing myself going to be positive for my health or negative. I know that sounds like an easy question, but it isn’t always as simple as it might appear. There may well be other things that could have a greater positive effect happening at that moment.

As I said this isn’t meant to be selfish in any way, but I feel that I have hit that point where I need to be just that bit more self-centred. It’s not so much a choice, more a realisation that it’s what is required.

Read my blog from 2 years ago today – 4/06/13 – A social issue

I can confirm that the temperature has risen again, nothing to actually being able to get out there, or of the temperature of the air coming in the open windows, I went to bed in the middle of Eastenders last night! I had pushed myself to stay awake to see it, there was some total rubbish preceding it, but there I sat determined that 8:30 would be a reachable goal, then I suddenly, I crashed into a store of total inability to sit there for even a second longer. This is only the second day where……………