Beyond togetherness

Some things in life are meant to be easy, especially these days when technology has simplified and mechanised so many things, but it is actually not as easy as the designers believe. I wrote a post recently about my frustrations with our new “Smart TV”, or possibly not so “Smart TV”. In many ways, I have now learned most of what it does & doesn’t do, still things seem to be getting worse not better. I am coming to the conclusion that there is a huge gap in the market that someone could so easily fill and no it wouldn’t just be useful to people like me with no memory, I believe that with the huge range of channels and services, that nearly everyone needs this. It could be an app, or for me PC program or possibly a gizmo all of its own that allows you to see in one place all the programs you have already recorded, have waiting to record, might want to watch and always watch in one simple screen. I would bet my house on the fact that I am not the only one who just can’t remember all those things and lands up just getting in a muddle, double recording at different times the same series and missing the things I have seen advertised as I can’t mark it in any way to remind me unless I am willing to miss what I am watching, just to set it up on the reminder service, so I then land up spends ages scrolling screens trying to remember the channel & program name. Then of course, there is the problem of those programs you couldn’t record or watch at the time it went out, so I then spend time trying to find it on ‘On Demand’, only to find it isn’t available. How did just watching TV become a major logistics issue? Even as an ex Operations Manager, I would have had to build a program to track that lot and I can’t do that any longer for a range of reasons.

Between my memory issues and a body that is not able to do what most can, I really do feel as though I am being let down by the world of technology. I was always a person who was more than happy to embrace the new and although I know it is all part of aging that means we look at the new and ask “Why do I need that?”, simply because what we have does everything we personally need, but I now also feel that I am forced into ‘change’ whether I need it or not and all too often it actually makes life more difficult. It is totally understandable why companies like Microsoft change things every few years, they are in business to make money, so stopping support on older versions also makes sense to them, I am dreading the day that this PC dies or Windows 7 becomes obsolete. The whole idea of having to learn a totally new system in a version that won’t give me the things I once used with ease, fills me with dread. My brain is already happily ditching things left and right, how I would get it to hold onto something totally new, well I am sure you see the reason for my fears. I know the world can’t stand still and that isn’t what I am asking for, I just ask that when they change things, that they maintain what those like me can at least recognise, rather than them throwing my baby out with their bathwater. Sorry, I am ranting again, promise that it for now!

Adam isn’t well this weekend, he seems to have picked up some sort of bug which of course, has me just waiting for it to hit me as well, so far so good but it really has knocked him for six. He spent almost all of yesterday asleep either in bed or on the settee, about the only thing that he did yesterday was to find my missing earplug, I had taken it out and just dropped it on the floor, but something that small isn’t easy for me to see, so once he got up yesterday and read my blog, he went and found it for me. Last night with him more than happy to just sleep, really would have been a perfect evening for me to have taken an early night, but once again I didn’t. I don’t know why I do this, but it has happened again and again, the main evening viewing is over, there is nothing else on to watch live, so I find a half hour pre-recorded nothing to take us through to 9pm. Half way through I suddenly realize that he isn’t watching and I am suddenly exhausted and could have been asleep, but having started the program, I won’t waste it and watch to the end. I would say this happens at least twice a week and neither of us ever have the sense to say, I don’t want to watch that or do you mind if I just go to sleep. Why is it that couples never really say these things to each other I don’t know, but it is something I have noted through every long term relationship I have ever had, we don’t want to step outside what is our couple routine and just say “can we do this differently?” I know for me that part of it is the preciousness I feel for the time we actually have together and I know Adam has said the same thing, but I also know that he feels a degree of pressure added on to that by me. It isn’t something that I do directly, it is because I spend so much time by myself, the only person I see, is Adam and that puts a twist in our relationship. It is hard for anyone who isn’t housebound to imagine being on their own every day from half an hour after waking, right through to 6:30 ever single night when the only person you have spent more than 20 minutes with for the past year, comes home. In 7 years of being housebound, I can add up with ease the number of people who have been here in my home with me and that includes workmen, medics, and family. If it wasn’t for Adam, I could go months without seeing a single living being and that is pressure, whichever way you look at it.

When we met, both of us knew there was something different about our relationship, it was strangely intense and perfect from the very start, despite many, many reasons that it shouldn’t have been. Neither of us could possibly have foreseen what would happen in the future, but I can honestly say that I don’t think I could have lived like this with anyone else I have ever known. As I said it is an added pressure for both of us, for me it is having to remember that there is a world out there that he is part of and has to remain so for his own sanity. I have to never try and stop him from doing anything, no matter how much I would prefer him to be at home every second he isn’t working, that just isn’t realistic. I do everything I can not even let him feel or see if I am disappointed by him wanting to live and see people, but I know he feels that, as he always double and triple checks that I am OK with him going out for coffee with his sister or whoever. That equally shows that he has a miss placed guilt over leaving me alone, there is a circle there that both of us have to work with that I know I have never felt any other time in my life. We are at the start of our 8th year of living like this, can you imagine standing in our shoes with your partner for that length of time?

What we have as a couple is special and I realise is also probably something I should talk about more as it really is one of the elements of chronic illness that although there in what I write, maybe not shown as strongly as it should be. There is one thing that I have no doubt of and that is that you partner can mean the difference between sanity and insanity, when you are locked into a space that there is no true escape from, they become our lifeline and our life.


Please read my blog from 2 years ago today – 18/01/13 – Lost and trapped in one 

I had everything ordered in my head when I got up, exactly what I was going to write about and what I was going to say, then I started wondering. Not in my mind but around the house, sitting in each room without having a reason to be there, just sitting………..

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