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
Two Rooms Plus Utilities 
Great post again Pamela, you put it all so well, your experience, research into your condition, going through all those Doctors/medical people, even when they kept brushing you off. I’m convinced that there must be many of us who have long term health conditions, going back years in many cases, who have either been dismissed out of hand completely by GP’s and or certainly not taken seriously enough, at any point? I also found this as a young Mum in my 20’s(I was fit and able then) but there was something drastically wrong with my son, I could feel it, despite not having any proof, you just know. I can always remember the paediatrician we were referred to, he was so arrogant and dismissive, quoting that great line, “oh you’re a first time Mum, aren’t you, think you’re fussing too much, over-reacting”. After many months of frustration, heartache, worry (no internet then)very little family/other support, my health visitor saved the day, took me seriously and arranged an appointment with a London Neurosurgeon, who would have a clinic in Kent (where we lived at that time). This did take some time, but after a lengthy assessment, my 2 year old son was diagnosed with Cerebral Palsy, hardly a minor thing, in fact it was a major shock to me, made much worse by being brushed off all that time. I know that was back in the 1980’s, but even still and would you believe, we continued to have that same paediatrician down the years and of course he never admitted he got it wrong and never apologised, so I think that made me very cynical when it came to my own health.
What’s getting me about current GP’s/medical care is that it’s been getting more and more difficult to get an appointment with my GP, get referred for other things like X-rays. My actual GP usually requests that I see him again, usually every 2-3 months, depending on what’s going on with me. But it’s made so difficult as you can’t make one on leaving the surgery as “it’s too far ahead for the computer system”, then you have to make a note in your diary of when to do it, but you phone up and it can still be too early, or you leave it slightly longer, then you can’t get one with him! On top of that, I have received at least 3 letters since November 2014, from the practice manager, asking me to make an annual asthma check appointment, with the nurse. I don’t want one any longer as I don’t feel there’s any point, but I do want the appointments with my GP and to be referred for things when required. How many other letters like that are being sent and how much money and time is that costing? The thing is, I think they get extra funding for these and things like bllod pressure, diabetes and cholesterol checks, usually on quite healthy people! I suppose I will have to speak to someone at the surgery next time about this, the only good thing is the GP asked to see me in one month from last week, so I managed to book that before I left.
A comment on the attitudes people have of being housebound, not being able to do certain things, marriage and more. I have come to the conclusion that as most people live a certain way, they seem to want everyone else to do the saem as them. I presume this is because it justifies what they are doing, though I’m still not sure why they have to do that. I know that I have never really lived a life like my peers/other similar aged people, that isn’t necessarily right or wrong, but right for me. The thing is I wouldn’t dream of telling them they should do as I was doing, even though I may privately be puzzled about some of their choices.For instance, I have seen many couples, who seem to drive each other nuts, argue a lot, yet keep doing everything together.It doesn’t seem to occur to them that it might be healthier/better to spend at least some more time apart?? People who have more than 1 or 2 children, while bemoaning how awful/exhausting/expensive. difficult it is. When my son was young and he had been diagnosed with his disability, I was asked when I was going to have another child, “I might get one that was normal”! When I responded that I wasn’t going to have another child and it would be very difficult, I got a comeback comment of, it’s easier when you have 2″, in who’s world and again, they thought I should do that, as they possibly had, even though it may have been a disaster. I still think it was the right thing for me.
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FIRST: PAMELA; I WISH I HAD YOUR STRONG SENSE OF WHO YOU ARE.THAT IS WHAT MAKES YOU NOT ONLY SPECIAL, BUT WILL PROBABLY GIVE YOU MORE TIME THAN THE DOCTORS SAID. THEY WILL BE WRONG ,AGAIN, L.O.L (MEANS LOT OF LOVE). SECOND:MARION61. THANK YOU FOR PUTTING IN WORDS WHAT I DEAL WITH EVERY SINGLE DAY.I MISS THE DAYS, WHEN DOCTORS BECAME DOCTORS, TO HEAL PEOPLE.THOSE DAYS ARE GONE.IF YOU THINK SOMETHING IS WRONG, YOU KNOW BEST.KEEP ASKING.20 YEARS OF ASKING,GAVE ME AN ANSWER THAT WAS 20 YEARS TOO LATE. NOW I LIVE 1/2 A LIFE…..NEVI….CANADA
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