I lost just over an hour of my morning today and all because of two things, the TV and Adam. It is normal that Adam switches the TV on while I come up here and get settled for the day, but this morning although it all seemed to come on, nothing appeared on the screen other than blank blue. We talked about the possibilities and Adam carried out a couple of checks, but nothing happened, we even rebooted the entire system, but still the screen remained blank. Throughout his fiddling with it and even when he was in the shower, I had to resist the urge that I always have to just go over and do it all myself. Years ago I wouldn’t have even asked Adam to try, I was the one, simply because anything either electrical or computerised are the two areas I have expertise in, but recently I have been teaching myself to hold off, to trust him to do what is needed. Already it is a fact, that I am not up to climbing behind TV’s, lying on the floor checking wiring and so on and as time goes on he has to learn to do these things and take over what is required in simply having a home, on top of this I have to put my trust in him to be able to do things. By the time he left, the TV was still dead and I had opened up on my PC the morning News so at least I could hear it, if not work and watch it at the same time.

It is hard to resist not interfering, I know it really annoys him when I do, so I remained sat here and left him to phone Sky from work, as I was also resigned to the fact we would probably be buying a new Digi box. So I simply got on with what I had to do and waited for Adam to get on with what he had to do as well. When the phone rang I thought it was going to be Adam calling to say there was either an engineer on the way, or that we would have to wait for a new box, but he had the web details for me to buy it, it was neither. Adam was just calling to check if the TV was still not working, so with him still there on the line I walked over to the set and switched it on, in less than 10 seconds I saw what was wrong with it and 10 seconds later had it working. All that was wrong was he had accidentally clicked the source button and the TV and Digi box were no longer connected, a simple mistake, one that has happened a few times in the past, but one he had clearly forgotten about, it leaves me with a quandary, in future do I interfere, which he hates, or do I still let him take control. It is incredibly hard to hand over control of your home, even if it is just bit by bit, despite the fact I have handed over all the housework, I still sit here looking around and become embarrassed that it isn’t all spotless from ceiling to floor both included, but I am equally aware and grateful for the work that he does. I am sure that it is part of the madness caused by MS that the urge to climb a ladder and start Spring cleaning the house throughout, especially as the actual outcome wouldn’t be a clean home, but me unconscious on the floor, possibly with several broken bones, but I still want to do it.

I know it is something that all of us face at some point, most through old age, but handing over my home has been as hard as it is now to accept the possibility of handing over my body to someone else’s control. I suppose we are all creatures who once old enough to gain control of our own worlds, never want to slacken that grip on it, not even by a fraction. It is incredibly easy when you are young and still growing your circle of influence, to not be able to even imagine how it might feel to lose it again, even when you are middle aged, you never consider a future where you have no control over what is yours, we just don’t think that way. Inside we are eternally young and what is happening to the outside of us, we simply ignore, what we see in the mirror isn’t us, but the version of us we believe should be there. None of that changes when you become ill, it is no different from growing old, it happens bit by bit and it happens without our permission. When people say they get frustrated by their illness, I think it is this that frustrates us not the illness at all. We are frustrated because we have lost control of all that we worked so hard to build, be that our home, our knowledge, or even our bodies and worse still, the tiny areas that we might still be able to have some control over, we have to hand over in preparation for the time when we can’t be of any use at all.

There are two level to purpose of our existence, one I write about constantly, to be able to love and to be loved, but there is a second one which is just as important and that is to be of value, to be of use and to be able to give input where it is required. I am lucky in that I am secure within the first level, without love there is little point to life, but it isn’t everything, that second level is just as important as it helps to define us as people. Far too many people once they retire, suddenly go into a slump, as they have lost the thing that gave them purpose to the hours that make up the day, they become lost as they are no longer, this or that, they are x-this or x-that. It often looks as though women manage better with retirement than men do, possibly because they have a secondary purpose, that of homemaker and it can take over, giving them another purpose another reason to their day. Chronic illness takes away all of that and an awful lot more, I also believe that the slow drip, drip removal of everything you have known, is harder to deal with than it all just coming to an end, my grieving over what my illness is doing can’t end, until I have lost the final battle of dignity.

For now, I guess that I will still have to keep handing over, keep trusting and keep quietly trying to teach as each new household hurdle arrives until I have passed them all over, or we are bankrupted by repair man bills.

Please read my blog from 2 years ago today – Achieving structure

It has been a strange week on one level it has been incredibly normal and quiet on the other it has been really hard and stressed, which is not normally for me a good place to be but I think apart from being a little tired I have emerged rather unscathed by it all. Heading through life with no direction has become a feature over the last few years, I never was a great one for detailed plans but I always had a general…..