Life can be a real strain at times when you are living with a mind that seems to have a perverse joy in tripping you up all the time. I am in one of those phases where I am spending more and more time simply frustrated with myself because I just can’t follow through with a simple thread without getting wound up in it. It doesn’t matter if it is just in conversation or finding myself unable to complete a task, I keep finding myself unable to finish what I have started. Adam has always been the type of person who doesn’t like things being pointed out to him, which with the age gap and difference in life experiences often is very difficult for me not to do, when you are comfortable with the person you are talking to it is especially hard to be guarded all the time and not simply let your mind run your mouth. There have always been and I suspect always will be times when tact has gone out the window and I hear what I am saying at the same second he does. Having been a manager and with a reasonable understanding of different management styles and personalities, I often find myself trying to help him with situations at work where he has become wound up by the behaviour of his manager or someone he is working with and I do my best to explain what I believe their thinking and actions are really about, whilst trying to calm him down and not make any of my guidance sound patronising. Over the last few months, his stress levels with work have been through the roof, something that if you read back over the last month you will see clearly the knock-on effects. In the last couple of weeks, everything has been rapidly improving because we have spent long periods talking and going over both our lives together and his work situation. It is because he is now so much calmer and dealing with thing so much better that I actually feel able at last to write about this as I know if I had before that he would have read it then bottled it all up again out of fear of putting stress onto me.

When your mind isn’t quite what it was and you know that without any malice or even any reason behind it you can become wound up, not quite shouting but forceful in your speech without hearing, feeling or even comprehending that it is happening until much later, being a confidante, is hard, incredibly hard. It meant that for the first couple of week when we seemed to do nothing but talk, I had to put a lot of my energy into monitoring myself, whilst listening and responding with thought to what had actually been said, rather than just letting my answers flow. We needed to listen to each other, something I think we both had not really been doing for a while. When life centres around what my health is doing at that moment, both of us as people have at times, vanished and us as a couple, well we didn’t always exist. Like millions of couples out there we were coasting and for me that meant life was easy, but for Adam it was stressing him even more, as he rightfully felt that everything was on his shoulders. It wasn’t the way it was planned or even thought about, but it was what happened because I was so caught up inside my illness and he was doing what he thought he should. It is hard for me to write for Adam and I don’t intend to, this is really for all those husbands and wives who are ill and find themselves feeling an odd combination of guilt, reliance and love for the person who they adore, but can’t show it in the ways they used to.

There were a couple of occasions recently when simply because I had reached the point of exhaustion, that I knew my tone was scalding and judgmental, neither were the desired effect but they happened and I later had to apologise only to have Adam say that he knows it’s not me, as if it were, well he would have been gone long ago. It doesn’t matter how much they understand what we do and say thing that aren’t really in our control or that they know without a doubt that we aren’t that snappy, rude or demanding person who just sits there doing nothing, I realised in the last few weeks, that I had stopped saying sorry. Somewhere along the line, probably because Adam kept telling me I didn’t need to apologise, I stopped. It wasn’t until we both stepped back and took a long hard look at us, each other and ourselves that I noticed it, I had allowed my disabilities to take over, it rather than me, was living here with the person who did everything for it. Other than when he brought me something, I couldn’t remember the last time I thanked him for doing the housework for me, or the washing or any of the other things he now does that used to be my jobs. I know that just like the “sorries”, he told me to stop thanking him and just like the “sorries”, I did. I had also stopped even trying to not snap, or to be abrasive, what my brain did, I did and I carried on without doing anything about it. Between the three of us, me, my illness and him, we had pushed each other away and let my illness win and it happened without either of us even seeing it.

It is incredibly difficult to live all the time trying to control the uncontrollable, but in the last few weeks, I have been doing my best to do just that. I haven’t achieved my goal of being human with an illness, rather than just the illness all the time, but I have realized that I have to keep doing that for as long as I can, not being easy isn’t an excuse, it’s a cop out. Yes, I have to still stick to routines and I have to keep my world as stress free as I can, but that can be done and still remembering that my carer is also my husband and he has every human emotion and feeling that he always had, even if I no longer do. Temporal lobe damage is a fact, it means I will never be the person I was or able to do the things I once did, but I still have enough control to be able to show I care more than it might appear that I do. It is so easy once you are this ill, to just slip into routines that you don’t intend and to not notice the importance of the small things that lets other know just how grateful and appreciative of everything that they do for us. I have already lost control of many of my emotions, I react in ways that I wouldn’t have done years ago and I will never have that control back, but I do have the ability to say sorry even if I am not allowed to use the word itself and we all do.

When your mind feels as though it is no longer yours, making mistakes in simple social responses and reactions will happen and we can’t change that. When your body is always in pain and as useless as a burst balloon, it will let you down and embarrass you, it will mean that you can’t do much of anything of any use to anyone and we can’t change that either. But we can remember for as long as we can that the people around us, especially those who care about us are humans with human feelings and we have to remember to treat them as such, for as much of and for as long as we can. To those who are our carers, please don’t bottle things up, we are fragile but we don’t break with the slightest knock, talk to us if we annoy you, hurt you or put more on you than you can really handle alone. Love can be shown in a million ways, but when it is hidden behind illness, from either side of that barrier, it means we have to try that bit harder to still be people and to make sure our love is felt, as it is the one thing that really can and does make a difference to our lives.

Please read my blog from 2 years ago today – 27/02/13 – Which are worst 

The appointment for endoscope has arrived, it is on the 14th of next month. At least with this one there is now need to drink huge amounts of nasty cleaner, I just have to not eat for 4hrs, which I know I can do with ease. Unfortunately it is an afternoon appointment again……….