I found myself sitting here just doing nothing really, looking at things on line that I wasn’t even that interested in and this is normally my busiest time of day, something was wrong. It took me until I had dragged myself away and I was standing in the kitchen not really keen to get a bowl out of the cupboard that it hit me, I quite simply didn’t want any breakfast. My brain does this to me a lot lately, it just doesn’t seem to give me clear instructions or explanation of feelings, rather distracting me from knowing what it already knows, well that’s how it feels. How could I not know that I wasn’t wanting breakfast and the whole idea was nauseous, as that was finally the feeling that I had as I lifted the bowl and returned it to it’s friends, but to that second I was simply pushing myself to do what was right for my routine. It is just one example, the list would take pages, rather than just one post, I constantly get this feeling that I know something somewhere in the back of my mind, yet it takes some action of some sort before I manage to join the dots. It feels oddly like my brain is slowing down, which isn’t new, that feeling has been around for a long time, but recently it has been that little less subtle and that bit more like a constant slap in the face. I have been trying to work it out, well of course I have, when am I not trying to make sense out of things that so often don’t have any sense in them at all, but I can only put it down to two thing, being so terribly tired all the time and the almost constant nausea. Both are perfect for pushing you off your game and leaving you that bit lost in the middle of a world that hasn’t changed to your step.

I spent a little time yesterday skimming through some of my posts from the last couple of months and there is a constant theme of both those things, almost every post mentions one or the other. I don’t remember them either being so dominant in my life for such a long time, I honestly haven’t hit the point that I used to everyday around 10am when I finally woke up from my previous night sleep, I no longer wake up, I am simply existing between two impossible pillows, impossible as they are never quite deep enough or ever felt for long enough. The hours I spend feeling sick also seem to be growing, actually I don’t know if that is fair, what is, is that it is feeling deeper and more intense. I am also very aware that it is slowly pulling me down, not so much in my mood, but in how I feel about daily life, I don’t have the same enthusiasm, or drive, I am struggling more than I have for a long time. I am beginning to feel as I did when work was pushing me to far and I had to change how and what I did, by rethinking the whole work issue and how I could still produce what I did, but in a way that allowed me to feel alive at the end of the day, rather than like a drained prune. Unfortunately unlike work where I just sat for a couple of months writing programs that could do every step of my daily set work for me, leaving me only to deal with the stream of ad hoc requests, I can’t program my life or what I do. What I do know is I need to change something and I need to do it sooner rather than later, but what ever it is, it isn’t going to happen over night.

It is one of the things about life with any progressive condition, you live happily for a while, then start to slide and you are forced into reassessing and reorganizing your entire life and I do mean your entire life. It isn’t just about changing one thing, if you are still working and thinking that it may be time to stop, well I am sorry to tell you this, just stopping work isn’t going to be enough. Adjusting is about changing every element of your day, from how long you sleep, to when you eat and what you do in between. If you can without blowing your pension apart, go from full time to part time, that would be my recommendation. The good that working does for us as people can’t for most of us be replaced by anything less. When I was forced to stop, I knew that I had to replace it with something or I was going to sink faster than a stone, in my case I was forced out by redundancy and I knew finding another job as a housebound person was going to be hard slog. Despite working probably harder than I had for the previous two years, I failed, but along the way, thanks to my daughter insisting I was on Twitter, facebook, linkedin and more, I discovered something that along with my own addition of my then new blog, I built my replacement. In the past three years I have had to do many adjustments, progressive conditions all to often speed up and I know mine has, all I have kept out of what was once a vast array of site and online input, is now just down to my blog and twitter. Even twitter is now about half the amount daily tweets that I used to do, but it had to be done each time, as I am slowing down and my ability and energy is lessening almost daily at the minute. That is exactly how I have felt at every milestone that signalled change and it’s how I know I have to change things again.

Next to getting your diagnosis, admitting that you are getting worse and are at a point when something has to give, is the hardest thing about being ill. No one, not any of us want to admit we are failing and that is how it feels. I don’t need anyone else to tell me any longer, I know I am not failing, maybe fading a little, but not failing and no one else should feel that way either. I know that is easier said than done, I have beaten myself up about it over and over again and I am probably going to continue to, that’s because I am human and that is the one thing that is hardest to hold onto, being chronically ill is human and not an invite to be superhuman.

Please read my blog from 2 years ago today – 19/12/12 – Controlling Reality 

Another night when I ran to my bed as soon as the TV let me,it’s mad the way that we let that box in the corner rule our lives. I know you will say why not record but I record all evening the best of what I’m not watching, that way I have reasonably good stuff to watch during the day. I was really in a mess yesterday….