I can’t be sure if I just went to sleep, or if I actually passed out last night. It’s a problem I have frequently when the vice around my chest tightens to the point that anything above a shallow breath is impossible. I was lying there in bed last night desperate for sleep, but as so often happens, the pain was in control. I know that it is impossible for it to be true, but sometimes it feels as though my diaphragm hasn’t let go from trying to cut me in two at all in the past thirty-six months. The truth is that there isn’t a day that I have been free of at least discomfort, pain, well that isn’t every day, but it’s not far off it. After the dramatic events of June, I have been trying my hardest to ignore it. I have managed not too badly to do so in the past, but I can only say, this time it isn’t working. Either it is worse, or my ability to pretend that it’s not there is getting weaker. Last night, I remember clearly lying there with a growing headache and fuzziness then suddenly nothing. When you are really tired, going to sleep suddenly isn’t that unusual, I do it all the time. What I don’t like is the sensations that preceded it. The problem with having a bad memory is that I can’t be sure if they are getting worse or not. It feels as though they happen more often, but I can’t be sure. It a real issue especially when I am in bed, as I can totally forget by the morning if they happened or not. The one good thing is that my appointment to see the consultant has arrived, it’s not until the start of September, but at least I have the letter now.

I watched a program yesterday that made me realise just how an unusual a situation I am really in. It was about a 39-year-old women who was expected to die within months from breast cancer. She had been shocked to find that nearly everyone asked her if she had a bucket list and had placed something on Facebook asking others who were dying if they actually had one as she hadn’t even thought about it. The program was about the people she met through that one request online. The whole show had moments that made me think and brought up realisations about my life. The first was simple, no one close to me other than my son Jeffery has ever died young. The only deaths in my family or of partners families, have always been those you would expect, grandparents. Even all of those grandparents, not one of them went slowly, they weren’t a decline if you like that you could watch. They all went from a state of as fit and healthy as any other elderly person and all died in very short periods of time, just a matter of days. I am the only person I have ever known, who has been told they are going to die young and has had time to think and live through their decline. I don’t have any example or rolemodle if you like, as how to do this slow dying thing. In most ways, though, I think that is a good thing. As it is one less thing to beat myself up about, I have no list of what is right or wrong.

The second was the fact I am housebound. All on the show were still very much out and about, some were still working, which is something I thought I would still be doing. Housebound is when I think about it a more unusual situation these days than it was a hundred years ago. The arrival of motorised wheelchairs has meant many who were once trapped at home, can now be part of the world. To be housebound these days, you have to be like me, with not enough energy for all that getting dressed and ready to go. Far less the energy to actually enjoy being out, it’s all too much. Plus living in a Victorian tenement flat, does add in the issue of Victorian builders, hundreds of stone steps with no other way down. My situation is one thing I did accept a long time ago and it wiped out any notion of this modern creation the bucket list. For me, that wasn’t a problem, as the one thing I did actually have in common with many on the show, is that I don’t actually have anything I haven’t done, that I have a burning desire to do. I know that some people won’t be able to believe that, but even back when I was first diagnosis and I was still fit and able, I couldn’t think of a single thing that I wanted to do before my health failed. All I wanted was to work and make my home the best I could. Something I intended to do anyway. I actually thought that I was the only person alive who didn’t have a single thing to put on a bucket list. It felt good finding that I am not some sort of freak, or incredibly old-fashioned, as even some in their 20’s felt the same way as I did and that was the third thing.

I have always thought in life that there is no wrong way or right way of doing anything, there is just the way it is. No matter how much I believe that it is inescapable that I compare myself to others, it’s human. All of us will silently chastise ourselves when we fail, especially if we have seen other achieve what we didn’t. That figure of the person who got it so right stands over us always. All of us will equally praise ourselves when we achieve what others failed to do, they too will always be in our minds looking up at us. When you have neither when you are the first to do what you have to, it’s natural to feel a little lost. Here I am the first person I have ever known who is housebound and the first who is dying in years not days. I am totally content with all of it, but I still don’t want to miss out on anything that life has to offer me, just because I didn’t know. I found it refreshing just how well all of those they showed who were just like me accepting of their lot and not screaming and shouting about the injustice of it all. Only one occasionally shed the odd tear, but that was the woman the show was about. I think it is impossible when someone is talking that honestly for the odd tear not to escape. The rest, though, they were upbeat, positive if you like, I don’t, I really dislike that word as it’s pointless if it isn’t genuine. They were genuine. I saw people like me, who could laugh, smile and see the beauty of life and that felt good. My personal experience and the reason I nearly didn’t actually watch the show was that all too often they are depressing or annoying.

There are so many TV shows out there filled with people who can’t come to terms with what is happening to them. Who see what is left of their life as something horrid, violent and being inflicted upon them in cruellest way possible. People who I believe have missed the whole point and have become victims. Try as I might, that is something that I can’t get my head around. I just don’t feel or ever have felt that my illness is in any way some sort of punishment for life. I’m not it’s prisoner. I’m not scared about what is happening to me or will happen to me. As long as the pain is under control, which it isn’t totally at the moment, but if it isn’t any worse than this, well I will remain happy. I still have a life to live and I for one intend to live it and love it.

Please read my blog from 2 years ago today – 30/07/13 – Going out, no thank you

Those who read yesterdays post probably noticed the spark that appeared just at the end and made an intelligent guess as to what I would be writing about today. I haven’t for a long time now actually thought that…..