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…….