I want to go back to my bed right now. I was up just 15 minutes late last night and I am sure it is just physiological but I feel like I have missed half my nights sleep. Like anyone when they are tired, I am finding concentrating and staying doing what I am supposed to be doing, rather than going off somewhere to look at pictures, much easier on the brain, or check my emails, disappointing as always, is incredibly difficult. I guess all of our brains prefer to do the easy option, it’s just we don’t give into it when we are awake and totally with it, getting tired just means we drop our guard. I really didn’t need any more proof, but the second I completed the last sentence I was off, no not to some other site, but off to the bathroom to use the mouthwash the doctor sent me, a clear case of my subconsciousness ruling my mind, I was at the living room door before it even clicked consciously that I was up and walking. That is something I noted a long time ago now, that I do a lot of things without conscious thought, well it’s either that or I am forgetting I have thought about it, I actually prefer the first option. I first started to notice it when I found myself heading to the kitchen without a clue why I was even standing, I used to think that it was a twist on the normal getting to a room then forgetting what I went there for, but there were occasions where I honestly don’t remember even thinking about anything, but there I was heading with clear determination of my destination, but not knowing why until I was there. Like just now, I was heading to the bathroom without a clue but the second I reached the sink and the medicine cabinet, I knew why I was there. That is where the difference is, I don’t get there and not know, it’s just when I am walking that I don’t know why at least with this one I don’t land up having to make the journey twice to complete my need.
I really don’t seem to be able to stay still today, if it’s not taken mystery trips, it’s because the TV suddenly drops in volume and I have to get the other control to turn it up, no, it doesn’t work from up here, I can change channel but not the volume. It is just another of those annoying things, like having to fetch glasses of coke, my breakfast and so on and they just aren’t grouping together as normal. I suppose that is another problem of tiredness, you fail to think things through and to work things out as normal. I know mine is to the extreme but one of the things I have always wondered is how do people still drive when they have MS? Because I can’t and never have driven I was able to claim from one of the European funds for taxis to take me back and forward to work, I was still reasonably fit other than a lot of trouble walking in those days, but I used to sit and watch the traffic and between my failing eyesight and spells of dizziness, I didn’t have the slightest doubt that I would have been deadly to me or more likely someone else if I had been behind the wheel. Just imagine what would happen if you suddenly had a spasm in either a leg or arm, don’t tell me that either of those couldn’t cause an accident. Legally in Britain MS doesn’t stop you driving, but I honestly think it should regardless of which form as none of us know when these things will happen. There are actually only a very few illnesses that stop people driving, but I just can’t personally see how many of them manage to remain alive. I remember when I was a child I had an uncle who had diabetes, he had three bad crashes as he had hypo’s, all of them he was lucky not hitting anyone or anything more dangerous than a garden wall, he wrote off his cars, but walked away, personally I don’t think he shouldn’t have been allowed to drive at all. Apparently, we are supposed to self-assess, to me that falls apart as we have millions of drivers out there who think they can drive whilst talking or even worse texting on their mobiles, I doubt if one of them would stop just because they are ill. I know it would cost, but I think the moment you are diagnosed with any long term debilitating condition that you should have to go through an assessment every year, plus your doctors or optician should be given the power to write to the DVLA and stop you driving at any point if they believe your condition would make you a danger on the road through illness or age. I can hear voices all over the place shouting, “but I need my car, without it I couldn’t cope”, yes you would, I have never had a car and I have always coped, trust me taxis are cheaper than the running cost of a car and a lot, lot safer.
It doesn’t matter if it is driving or work, I honestly believe that if we are doing anything that could put another person in danger, that once we are ill, it shouldn’t be left in our hands to decide if we are fit to continue. I didn’t do a job that that covers, but I wish now that my doctor were restricted to just telling me that I should give up work, but they had had the power to stop me working. I continued to work for several years after the first time I was told that my health would improve if I stopped, I couldn’t see it, how could being broke with nothing to do possibly be better for me, it just didn’t make sense. I hate to say it but they were almost right, I say almost as the truth was I could continue to work but I needed it to be from home, which was the what happened. My last three years of working was completed with an improving condition when it came to everyday life as a huge amount of stress was relieved. When I stopped completely again I felt better in myself, my actual condition has continued to go downhill, but I have remained more able to cope without the pressure that work puts on us all without us actually knowing it is. If I could turn back time, I would now, knowing what I know, have handled things very differently and paid far more attention to what I was being told, but that isn’t the real world.
I firmly believe that the truth is we don’t know what is best for us, we aren’t the right person to decide if we can drive or work, as all of us don’t want to admit that we are too ill to manage anything we have been doing for the majority of our lives. It’s so hard to accept that there is anything you can’t do and taking that step is a huge issue, someone saying to you that they “think it is time for you to consider giving up work”, really hurts. I know that when it was first said to me that I left determined to prove the doctor wrong, stupid I know. Every time I heard it, all that happened was I became more and more determined, I needed someone or something to stop me, I suspect the same is true for the majority of people. I can also imagine that doctors don’t want that power, so maybe there has to be a half way person we are referred to who can assess us and give a final verdict. Something needs to change as right now, it isn’t fit for purpose, self-assessment never works for anyone.
Please read my blog from 2 years ago today – 28/09/12 – Memory Soup
I realised yesterday that my memory has more gaps in it than I thought. I was doing some writing and mentioned something from the first few years of our marriage and I realised that I really don’t remember that clearly the first 3 years. My memories of my life when I was 12 or 22 are clearer than just…..