The whole truth and nothing but the truth

The start of another month, already, don’t let anyone tell you or even think yourself, that being housebound is going to be slow, boring and that time will hang heavy forever, it doesn’t. If I am being totally honest I haven’t noticed the slightest change in any way, but I suppose the more time you sleep the less time there is left to fit in all the things you want to do. Even allowing for that, I still don’t think that I would ever find myself wondering what to do, or how much longer I have to wait for Adam to come home so that I have someone to talk to. As some of you know, I spend more of my time trying to catch up with my routine than anything else, but it is still the thing that most people who are still fit and healthy ask and seem to believe, that I have to be frustrated by not being able to get out of the house and that I have to be bored if not all, well for most of my time. I have tried many many times to work it out, just for myself really, as to why being housebound isn’t the slightest bit like others and even I thought it would be like, it used to scare the hell out of me, yet here I am content and happy in my home. If you read backwards through my blog, you will find the clues I am sure, but piecing them together might just take a while. Regardless though what you might find or what I have believed at the time, be it from always being busy, having lists of things I want to learn about, or even just the fact I find great happiness in being active online, I still don’t think that totally answers the why. The one thing that I do know without a single doubt is that if I didn’t have Adam, it would be a totally different situation. Despite the fact that I have read over and over that humans are totally social creatures and we are supposed to need hordes of people around us to be happy, I seem to only need one and I am totally sure that I am not alone in that.

Throughout my life, there has been one thing that has always frustrated me and that is so-called facts, that have come from so-called experts. It took me a very long time to realise that there isn’t actually any such thing, they are just people like you and me who have studied something and put it together in their own personal style, guided by who they are themselves as people. When you think about it the one group of people who we should question over and over are those who’s studies depend on their experience and what they have chosen to read, of the experiences of others, rather than undoubtable and unchallengeable facts, which is probably why I constantly question myself. Throughout the years I have been ill, I have developed a healthy distrust of what I have been brought to believe will or won’t happen to me at every stage. The biggest two I questioned were the ones that said I would become depressed and that life when housebound was going to not just be difficult, but also unbearable. The more I questioned it the more I found that there wasn’t a hard and fast reason why either should happen and that it was actually up to the person involved to build a life that was right for them, not the experts. If you think about it carefully nearly all of us know or have known elderly people who have never married and live alone, totally happy without any problems. All over the world are people who have chosen to remove themselves from society and live in what they now call “off-grid” lifestyles, never having contact with others unless there was a huge reason for that contact and they aren’t all depressed, suicidal or mad, so why is there this apparent belief that that is the expected future of the chronically ill?

The more and more I have thought about it, the more and more I have realised that when you are diagnosed with a condition where the facts are that you probably will be housebound at some stage, that that is the time to start planning it. I honestly believe that doctors are wrong in their belief, that not saying outright “yes the probability is you will be” followed by housebound, dead in x number of years, or whatever, are actually setting us up for a depressed and miserable future. I don’t care what the books say, what the psychiatrists believe, I believe that if we are told really early on that that is our future, then we can plan and adjust and more importantly, we can be happy. I am a world class researcher, I spent 20 years researching what was wrong with me even when the doctors kept saying there is nothing wrong with you. I never once came up with PRMS, but I came up many times with MS and other conditions that reduce life and or result in being housebound, I had from the age of around 25 the idea that this might happen in the back of my mind, whilst trying to accept what they told me. Once I had the diagnosis, the research flew into high gear and I directly questioned my doctors in a way they couldn’t wriggle out of and I started to prepare logically and emotionally. When I was diagnosed with my COPD, if it hadn’t been for Adam asking, I don’t believe that the doctor would have told us that I had 10 years to live, we were about to leave when Adam asked, to me he didn’t have the right to not tell us, which was clearly his plan. Just like someone who realises they will be spending their lives single, or want to live off-grid, I prepared myself for the life ahead so when I became housebound, I was already there waiting and happy, just as I am now at peace with my ticking clock.

I am an expert in me, but I know without thinking for a second that I am not that unique that what I have done won’t work for others too. This blog carries so much of how I sorted out a process that got me to this point, I just hadn’t made that final connection until now, that it was that planning, not luck, or my naturally ability to be happy alone, as trust me I haven’t always been, I used to go stir crazy like any other person, that means my life now is a success. Humans are incredibly adaptable, especially if we have prior warning and can plan for the changes ahead, have the time to question, grieve and adjust, prior to any catastrophic event, i.e. the person who has been thinking about divorce for over a year, walks away unscathed but leaves their partner in bits. I truly wish that doctors would stop believing they know what is best for their patient, especially when they don’t actually know that person at all and just trusted us to be able to live our lives once we have all the available information. If they did, well I think there would be a lot more happily adjusted individuals, yes still dieing, or still facing becoming housebound, but with all the information that allows them to make the most of everyday they have to live, where ever that might be.


Please read my blog from 2 years ago today – 01/02/13 – Setting out memories

I woke today for the third time in a couple of weeks with pain in my left foot, especially in three of my toes. I tried again to see if I could find the reason for the pain, but I can’t see anything. At least today is Friday so I will ask Adam to take a look for me over the weekend….