I found myself awake last night, rather suddenly and feeling rather lost as to what on earth was going on. I knew that I had been dreaming, but why on earth after 7 years of not being there, was I suddenly dreaming about work? It appears that it doesn’t matter how long it is since you were last somewhere, or last did something, it still plays around in the darker parts of your mind. I understand all too well how true trauma, events that terrified you and you thought would be the end of you can come back, I have often over the years for no logical reason found myself once more facing my horrors and having to live it all over again. The problem always is that when you are in the mildest of blackness, your mind just forgets to tell you the truth, that you are safe, warm and in your own bed. Last night though was odd, as I know that when I was working I often got myself wound up about challenges that I thought were beyond me, something I think is perfectly normal for most people, but it was just that which made last night even stranger. I was in the secure room, where all the IT servers for the company were kept, along with the switch, my baby that controlled communications, including phone calls, the backbone of any sales company. I was in the programming section and it was throwing up error after error, it didn’t matter how fast I fixed them, more just kept appearing. If I had had that dream 12 years ago, I would have understood, no one had ever trained me on what I did other than me and I always had a slight fear of getting it wrong, so I would have brushed that dream away, but why now?

I know that some people think that our dreams are reflections of what is happening inside us and I am sure that the translation of my dream would be that I felt just now as though I was out of my depth and feeling as though things are out of control, but I don’t. In fact, I doubt if I have ever in my life felt more in control of things, more able to live my life at a pace my body wants me to and without any real pressures around me to stress me or make me feel anything but safe. I can only think that my brain is getting bored, that it feels saggy and baggy, not achieving anything of importance and being wasted by the minute, that makes far more sense to me, but there is little that I can really do about it. I actually think it is one of the biggest mistakes that we all make, be it the person who is ill or those around them, that just being ill means that we need nothing other than rest, TV, books, magazines and grapes. I have to admit that yes when things are bad that is all you want, but one of the things about chronic illness is that for most of us it is phasic. We have our good spells and our bad spells and even those like me who suffer with issues that affect our brains, still do actually have brains to use. It goes deeper than just boredom, any idiot can find things to do to fill their days, but finding things to do that still stretch us, still excite us and have a real purpose, well that get’s harder and harder.

There is little out there past the level of playing games for no other reason than getting to the end of them, or to fill another hour, quickly loose their appeal. Reading is something that I also have found hard to do, concentration is a real problem, especially when you suddenly realise that you must have missed something of importance, but you have no idea where in the book, or when that might have been, you have no choice but to go back and read it all again. I have also tried those so called “brain training” puzzles, great for good days, night mare for the bad, but both reading and puzzles, don’t give you that feeling of having done anything of any use to anyone. Writing is the only thing that comes anywhere close to filling that gap in my life, as it is a real gap and if I feel it, I am sure there are many many others out there who also feel it, the answer, well sorry I haven’t come up with it yet.

I now understand why so many people when they retire feel as though they have been put on the rubbish dump of life, having spent years being a cog in a very big wheel, but vital to that wheel turning, to suddenly find it turns without you is hard. It also goes deeper than that, it isn’t just the feeling of being part of something, it is a feeling of being of no use, to anyone, that cuts the deepest. Being ill, or being old doesn’t mean you don’t still have a brain, many of us may have problems that means we are slower or we need to keep track of things differently, but our brains still have a need to work on something, anything of purpose. I have heard of several online projects which require people to help with work on genetics and so on, the problem always is, that by the time I hear of them through the TV, millions have signed up and it is impossible to join in. I have searched for sites that list them, or give guidelines on how to even find them, but nothing. Like so many of these things, you have to be in the know and if your not, you will never be able to break into it.

I know I am not alone in this need to do something, with this need to stretch and find out. I have no way of know just how many, but we are out here, all wanting to help, all wanting to be of use for as long as we can be, it is my body that is housebound, not my brain, it still lives and it screams at me occasionally as it did last night, that it is better than just a lump of degrading matter, it still have life, it still has strength, it still needs to be used and put to the test, just as it always has done. I hate to think of millions of other brains all screaming similar stories to their owners, all locked out of being useful by a body that just can’t keep up.

Please read my blog from 2 years ago today – 11/05/12 – Can I?’ or ‘Should I?’ 

As some of you found, I had started a third blog but I haven’t been able to added anything in the last couple of days. I have thought a lot about it and for the moment, I don’t think I will add any more. The first couple of days I enjoyed noting down everything and I really did think that I would continue as it was a possibly good way of helping me remember details of my days, some which might help when it came to details asked for by the medics. There was one problem thought that I hadn’t allowed for, I am not ‘Super Woman’. The constant remembering and having to think of ways of writing things turned into a step too far and I was coping, I had pushed myself….