Having the final world

I don’t often mention politics, but I am going to make an exception right now, thank heavens the UK elections are over and I am so looking forwards to tomorrow when the news channel will start reporting news again, rather than talking heads spouting rhetoric. I have always had a real interest in the news, I don’t know where it came from, but it is the only program that I never go through a day without seeing at least two hours of it, often a lot more and I have really missed it. There is something about being housebound that has turned the BBC news channel into a major part of my life, probably because it is my main source of information, not only news, as to what is happening in the wider world. If there is such a thing as a good era to be housebound, this has to be it, as at our fingertips are so many different ways of bringing the world to us, just 50 years ago, I know I would have gone stir crazy here, that is firmly on my list of blessings to be grateful for.

I know that a lot of able-bodied people feel pity for people in my position, I have seen it in their eyes and heard it in their voices, even a few have actually told me how sorry they are, but I don’t feel as though I need or require pity in any way what so ever. Yes, my health is atrocious but my life still has more positive than it has negatives, if it didn’t, believe me, I wouldn’t still be here. I always think that is the real tester when people say they can’t take anymore, is to ask themselves “would you really rather be dead?” Not a question to ask when you are highly emotional about something or screaming in pain, but one to ask when things are settled back into their normal patterns. I am a great believer in asking myself if I am still happy, not just because of my health, but in life in general. It was something I started doing a long time ago and if the answer ever comes back no, then I know that it is time something changed and the only person who can ever make those changes is myself. I have to admit that I didn’t ask it in the first year after I was diagnosed, but I counted that whole year as not being a time to make any changes and I still believe that one totally. I have heard some horrific stories of people who have thrown their lives away simply because they have become incurably ill, I don’t see that as a good point to change anything. Nor is answering a no once, if you do come back with a no, then wait a month and ask again if it’s still no, then do whatever it takes to make your life happy again.

There is something that life has taught me well and that is that life goes on and if you are prepared to put in the effort, it also gets better. Whatever situation I was in that made me answer no, I was never scared of making the changes needed, even leaving my first husband, when I walked away penniless and without a home, proved to be not the list of problems that many might think it would be. There is never a good reason to stay in a bad relationship, not even health, as I totally believe that a bad relationship will make your health worse faster than anything. Outside of the year that I didn’t ask myself there hasn’t been a single year that I have answered no, since the year before I met Adam and that no was due to another relationship gone bad. I have made no secret that I believe strongly that although life has its nature cycle, that cycle isn’t the only thing to be taken into account, the quality of life is actually the most important thing. Which is why I said that if I had been housebound 50 years ago, I know without a doubt that I wouldn’t have lasted this long housebound. There is a lot more to our life expectancy than just what our doctors can do for us and I think that is something that is often ignored. Our well-being is a huge mix of things and yes it includes love, but it also includes happiness, contentment and many other emotional factors, but it also includes how we see our personal position in life. When we are in paid work, we can then put a monetary value on time, but we also gain many other things from work from friendship to self-esteem, things that when housebound we have to replace and something I have covered many times in my blog. Extending our life expectancy requires a huge dose of mental well being, something that the modern world makes much, much easier.

In the past when someone became housebound those in the outside world started that ticking clock, no one and I do mean no one expected us to live for long after that. It’s clear that once depression sets in, everything else in our health also dips with it and the ticking clock is probably well deserved. Depression stops you from taking care of yourself, even without depression I have managed several times to develop weeping sores that if they had continued to be unattended would have grown into a much bigger problem. Depression stops you eating and we all know that poor nutrition plays a huge role in life expectancy, add the full effects of depression onto any chronic condition, especially one that is progressive and debilitating and life expectancy decreases rapidly. I honestly believe that these days, there is no reason why someone couldn’t live at least double if not many times longer than the expected time housebound people would have in the past. With the right attitude, a home that is connected to the outside world and people who care, I don’t see that housebound alone need now be a factor in how long we live. I am right now in my 8th year indoors and my personal ticking clock is set to give me another 8 years on top, that clearly though is dependant on how many flares and what they do to me, but for a second if I were to ignore that factor, I could quite happily live like this, right out to my full life expectancy, which would mean another 30+ years housebound. Our health is so much more than just one or a list of diagnoses, it is driven by so many factors that have absolutely nothing to do with the medical profession, but they will be the one’s patting themselves on the back for extending everyone’s lives.

Having said all that, I can’t take my health out of anything and I do strongly believe that the most important thing is the quality of our life. For each of us that is a very personal decision, each of us will have our own points where we would draw the wondering line of quality, as you can’t set a percentage point that is universal to the things that make life good. What I might consider to be unbearable, to you might not be a problem or vice versa and that is the way it should be. I remember a long time ago some scientist wrote a paper on measuring the quality of life of terminally ill patients, but I don’t think that is possible. If we took just one issue, being able to eat or having to be tube fed. I know because I was tube fed for three years that it isn’t that bad and I would if I had to be maybe not content to return to it, but I wouldn’t either put it down as unbearable, which is exactly what many might feel. It is only what we as individuals believe is right for us, that should ever be considered by the medical profession or anyone in any of the care profession.

I have spoken in the past of sitting and putting together what you might call a care plan, I still haven’t done it, but I know that I must as time is ticking away, but within that I now actually think we should add in a section that shows what we as people find acceptable when it comes to our care, not just our likes and dislikes. It needs to be like a living will and far more than a DNR, I know that would mean going into almost every detail of our lives along with all the possiblties that might be in our futures, but they are our lives and it is us who should always have the final word and should do so while we can.

Read my blog from 2 years ago today – 8/05/13 – A pattern of diagnosis

Sometimes it is easy to look back on life and see things for what they were, rather than what we thought they were at the time. I know I beat myself up for many years over things that I did because I couldn’t cope with everyday life, a life that any healthy person should be able to deal with. Over time since my diagnosis I have had those sudden light-bulb moments that mean now I look back and see I had……..

1 thought on “Having the final world



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