Worlds change

I was talking to my daughter earlier in the week, she was doing one of her check-up on Mum calls, but, it left me with a thought, that made me realise just how cut off, I am, from the world. To be honest, realising that was actually quite a shocker for me. I am one of the few who actually watches the news channels. No, I don’t mean for half an hour twice a day to see what is happening, I watch it. The News has always been important to me, but when I became housebound, it became an important part of my day. The first two hours of every day, is nothing but News, an hour plus around lunch time, and another hour of so around tea time. If something major has happened, well it’s not unknown for me, to stay fixed to the News channel for most of the day. There is something about not being out there, that has made the outside world and what is happening in it, essential viewing. I don’t suppose that that is too surprising really, but even politics has ceased to be a turn-off. The one thing that hasn’t changed, is I hate with a passion, the so-called local news, note, I don’t even give it a capital letter, it doesn’t deserve one. But, I digress. My need to be up to date, to know the latest state of the world, has become one of my driving forces. This week, with the terrible terrorist attacks in both France and Mali, and the Russian airplane being brought down by an explosion last month, has more than doubled my viewing. Teressa said something to me that made me realise something, I’m not connected to the world at all.

She has been talking for a while now about the possibility of a new job, which at the moment although having been offered it, she hasn’t totally decided whether or not to take it. John and she, have lived in London ever since they arrived in the UK two years ago. This job would mean them leaving the capitol and moving to a part of the country where they would be able to fulfil a dream of theirs, to buy a home. As we spoke, she out of nowhere added a new reason to move, neither of them, feels safe in London any longer. A few years ago, I would have thought of that, less than ten minutes after the news of Paris had settled into my brain. It never entered my head. I came off the phone, feeling cold at my detached state. How had I become someone who thought no further than the place I am sat? That in reality, though, is just how it feels. Despite all my efforts, to know the world, and what is happening in it, I have not been seeing the bigger pictures. Don’t get me wrong, I have a huge amount of empathy, for all who have been injured or lost their lives, and I fully appreciate, the severity, and the snowball effect, of what is currently happening, but I am still isolated from it all. It is as though the walls that have been surrounding me for the last 8 years, have slowly been getting thicker and thicker. Teressa’s reminder that she, her husband, people I know and love, still face the dangers of life, even though I no longer do.

I don’t know when the walls started to get thicker, how my feeling of isolation, somehow meant, that everyone else was also in glorious isolation too. I have lived for so long inside my cocoon, that I had forgotten what it means to actually be outside it. We all measure the lives of others, using our own as our baseline. My baseline is so far from the norm, that my measurement of the world has become warped by it. I had forgotten what it feels like to walk down a road, one moment in the warmth of the sunshine, the next, inside a shadow so dense that it has turned the world cold, as my life, is now spent always in the sunshine. I have nothing to worry about outside of me. I am under no threat, from anything other than my own body, there are no shadows. I have no job to lose, no children to pacify, no meals to cook or shopping to do and no bills to pay that aren’t covered. I have no need to look over my shoulder, to question the footsteps behind me, no friends to disappoint and no enemies to plicate, none of the realities of life, touch me any longer. I don’t quite live in a gilded tower, more a gilded cage, where someone managed to slip the cover over when I wasn’t looking. Is it any wonder that no matter how much I have tried to stay in touch, that all I have actually done, is to constantly learn the events, but not their true and ultimate impact. Yes, the facts of life are important, but so are the emotions, there is a clear danger that I had missed. When you live looking outwards, but only feel inwards, the balance is gone.

Semi-isolation, is not, a normal state for a human to live in. I am sure that I would be one of those people that trainee psychologists would love to do a case study on. I can just hear them squealing in joy, as they sat down and started to draw up a framework of questions and area’s to explore. What impact do 8 years or seeing few others than just one person do to someone? How psychologically balanced can someone remain without the normal interactions and pressures of life? I can hear them because I, and Adam, have heard the other side. The total disbelief that I can possibly be happy, content and not drowning in depression. Clearly, there has to be an impact, things that I haven’t noted, felt or seen, there must be, it’s only logical. The more time that you spend by yourself, the more you do look inwards. It isn’t meant with any malice, but it can be hard at times to hold onto, that those faces on the TV screen are real people. People with lives, people with feeling, people just like I once was, part of a bigger more vibrant world. At times, they even slip for two-dimensional all the way down to one. I have no line of reference to them, now way of connecting, as not only does the outside world often look alien now, it also sounds and feels it. It’s hard when your part of it, to understand what I just said, but it’s a little like having been in a coma for 8 years, one where some information filtered through, but still the world went on without me. Fashions change, people came and went, even some building managed that one as well. Words have snuck into the language that once didn’t exist, the entire make up of this planet, has changed in that time, and all I have had to keep up with it, is my husband, my TV and my PC. A vast quantity of available knowledge, but always controlled by what I knew, when I was last out there. How I react to that world, has clearly been changed by it as well.

Analysing my own life, is sometimes hard when you look at yourself with anything other than a mirror, well what you see isn’t always as pretty as you would like. Mind you, that sometimes happens with a mirror as well. We all change over time, but those changes are influenced by what surrounds us. I’m changing, but my surroundings, circumstances and company are identical, not changed in any way in all that time. As time goes on, I am sure I will miss as many of those changes as I discover. The good thing about the ones you don’t like, you can always change them back, which my unchanging world actually should make it easier for me, than it is for others.


Please read my blog from 2 years ago today – 21/11/2013 – The purpose of accountability 

It has been a strange sort of week, TV isn’t helping by being filled with little else than one of my favourite TV programs ever, “Dr Who”. I always thought that it was one of those shows that you grow up with…..

A little understanding

What is it about humans that we insist on making our lives more complicated than needed. I became of a small error caused by shifting from one site to another, the links in my old posts, of course, don’t work any longer. I had this mad idea that I could correct one page a day, as I work through adding the links to my post from 2 years ago that are at the bottom of every daily post. It is a total nightmare! I can’t find most of them now and it has made a mockery of some of the subjects as they rely on the links to make sense. It won’t matter until January, as the old site is still there just now, but once it closes, none will work any longer. I thought that blogging was supposed to be a relaxing and soothing process. Somewhere that I could de-stress, sort out my head and set off with a smooth start to my day, not a bundle of aggravation. I guess it was one of those not so bright, bright ideas.

Adam has just left for the day. Odd for a Saturday, but it is his mother’s birthday, so Adam and his sister are spending the day with her. I am very fond of both his mother and his sister. They welcomed me into their family without question. Something that I don’t think all families would have done when their 20-year-old son brought home his new girlfriend who was 17 years older than him. I was simply welcomed in and became part of the family almost instantly. When a couple of months later we announced we were getting married, they were delighted. Once my health deteriorated and getting out and about was not quite so easy, I became used to being left out of all family celebrations. It was my choice really as they did at first make a point of coming here once I wasn’t up to trailing all over the place. Unfortunately, his family have never seemed to understand the concept of time. At first it was just them being late on arriving and wanting to stay long past the time I should have been asleep. Then on one occasion, a few years before I was totally housebound, I had invited them for Christmas lunch, they arrived 4 hours late. I declared to Adam that I was never inviting them here again for any meal. I expected Adam to be on their side and I was ready for the excuses, the reasoning as to why I was wrong, there were none. He totally understood and actually felt the same way. He knew exactly how much work and planning had gone into that meal. He knew I had started to cook and prepare everything days before and he too had put in a lot of work towards it. He had seen the struggle that some of it took and how much pain and fatigue I had put up with, just to get things right. Importantly, he knew what it all did to my health. He knew that I was going to be paying for it for days after as well. Yes, it was my choice to put myself through all that, but that was part of my gift to them, on that day. Although his family knows how ill I am, they don’t live with us or see me day to day. They are really nice people and are caring and loving, but that one instance provided a perfect example of the difference between knowing and understanding.

It has taken my many years to accept that most people, no matter how well they are taught about anything, many can’t make that step over into full understanding. It requires empathy and quite simply, empathy can’t be taught. It may be because I have led what can only be described as a dramatic life, that I find empathy for most situations, incredibly easy. There is one huge problem with that, it is draining and it is often painful. I came across the other day someone complaining about a doctor they had just seen as he had been a little cold and lacking in feeling. I realised from the way they had written their post, that they had missed one simple point. If a doctor or a nurse were to feel true empathy for every patient they saw, they would land up in the mental health department as patients. Clearly we all expect a certain level of “bedside manner”, but to expect anything more than that I think is unreasonable. The medical profession does an incredibly hard job, none of which I would want to do. Our doctors are professionals, not our buddies and I can see that that distance has to be maintained these days. Gone are the days that you invited the family doctor to christenings and weddings and sent them Christmas cards and gifts. They have become more like an oil mechanic who you respect for their knowledge but don’t want to hug. It’s almost impossible from that one post I read to work out the sort of person who was actually writing. But there is one factor that comes into our interactions with doctors I think was missed, the way we present ourselves.

I knew someone years ago who felt the only way to get a doctor to do what they thought was needed, was to threaten them with legal action. He took great pleasure in telling them how his father was a top lawyer, in the position to squash them if they didn’t get it right there and then. On one occasion they complained to me about the attitude of the doctor, they had found them slightly aggressive, I wasn’t surprised. Just like family, we expect our doctors to understand. Surely, they, if there is anyone, has to be the one person who knows what we are going through. I disagree. I along with many other women I have met, actually believe that midwives shouldn’t be allowed to practise until they have had a baby themselves. There is something incredibly annoying about having someone standing there telling you it doesn’t hurt or it’s easy, just push a little more or worse don’t push at all, when they themselves haven’t done it.

Everyone who has a chronic illness seems to have one thing in common, we want to be understood. We aren’t looking for people who pity us, we’re not asking to be waited on hand and foot, we just want understanding. We’re looking for almost the impossible to find. The only ones with a chance of understanding us are those who have the same illness or those who live with us 24/7. Even those who share our condition, might not fully understand as there are so many variations, phases and combinations, make that almost impossible as well. We might share symptoms, lifestyle and aids, but that doesn’t mean we understand fully the effect on another individual, as we haven’t led their lives and we’re not them. Understanding isn’t found in books, it doesn’t come from hearing about it, I don’t think it fully comes from even living alongside us. Adam is amazing, I couldn’t ask for a better husband or carer, but even he at times doesn’t fully understand what I am going through. We can’t expect others to just look at us and know how we are. Our attitude at that second of time only shows that second, not our lives. It is yet one more thing we have to deal with, one more change that we have to make to ourselves, but it is up to us to teach all of them as well as we can. It is up to us to empathise with them if we want them to empathise with us.

Please read my blog from 2 years ago – 08/08/2013 – Adding the hours

I woke yesterday evening, yes I said evening. I was woken by Adam when he came home from work at 6pm, I hadn’t set the alarm as I really thought that I wouldn’t sleep very long, wrong! But it put to test my what if, if I slept longer…….