Fit for purpose

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…..

The monster ‘Can’t’

It is now 6 years since I last left the house by myself, my final day in the office when it all went so wrong that they gave me permission to work from home, I don’t think at the time that I truly realised what an impact that day would have on my life, as I had slowly been going out less and less. I was in fact down to just going into the office twice a week so being sent home to find a way of working with one hand seemed like a temporary situation. I suppose we all like to kid ourselves that we can over come everything and life will somehow slot back together. My personal history alone has shown me that isn’t always the case and well I’m not any stronger or any more inventive than most of the world. I suppose this time of year is always going to make me think back to that last day of complete independence, the last time I went out of my front door, locking it behind me and set off for what I thought was just another day. Anniversaries and birthdays are designed to make us think and they seldom fail to deliver on that point, no matter how hard we try to ignore them. It actually amazes me still that I was so determined to do the impossible back then, it really was my first taste of being totally beaten by something I couldn’t change. I have learned to take a more realistic view of the world and accept what I have to, facts like ladders and I don’t mix, you might think that is just logic, but it took a day when I scared myself silly to actually stop me from climbing. These days I usually assess what I have in my mind and work out logically if it is a totally stupid idea first, rather than trying and landing up hurting more than I have to or without putting my life at risk.

One of the things that I am guessing isn’t unique to me is that I never truly learn and never have the thoughts in the right order when I need them. What I mean by that is you forget what you can’t do at times. I have all to often found myself starting something, an everyday task that you and I don’t normally think about, and being caught out by those exact words, “don’t think about”. When you do things in auto mode, you do them because you always have, then suddenly I am stuck, in danger or wondering what I was or more correctly wasn’t thinking. An example happened a few weeks ago in the bathroom, I was having a problem with the curtain behind the toilet, so I started to climbed up so I could stand on the toilet seat to fix it. I was at the point where I had managed to kneel on the seat, with one foot on the seat, trying to find a way of pulling myself up when luckily it clicked that what I was doing was mad! Clearly I got down again without going any further, but I was one move away from what was a situation that the odds said would end badly, before I even really realised how stupid it was. Remembering your limitations can be just as hard as it is to accept them. I used to laugh when I heard stories of elderly people doing equally silly things, but now I know how and why they do, none of us for any reason want to accept that we can’t, ‘can’t’ is a world we don’t want to exist, as it says we are useless. If you can’t do everyday things, what can you do? What use are you?

Getting to grips with all those ‘can’t’ situations isn’t easy, it’s frustrating, annoying and defeatist. Sometimes it makes you inventive, I worked out that I can still open bottles of Cava or Champagne by using a Nut Cracker to grasp the cork and twist, or that the sealed jar that won’t open, will if you stab the top with a sharp knife to release the vacuum, it will. At other times, it leaves me in tears, banging my fist of the table or a wall because once again I ‘can’t’. But there is one other ‘can’t’ that causes me a big problem and that is I can’t always ask for help. I know Adam will do anything I need him to, but I still want to do it myself. I have a vision of the future with me totally unable to stand but still trying to climb to do something myself. Limitations are hard to accept when you have always been independent, learning the hard way is often the only way, but why I don’t learn the first time without testing it over and over again, I will never totally understand. So yes, I will some day soon be kneeling on a stool working out how to standup, I just hope my brain catches up with what I am doing in time.

Loss of myself

Today’s post subject is easy, not to write but to know what I have to say now. Last night Adam and I had one of our very rare arguments the subject well it doesn’t really matter that much as it was how it ended that was the important bit. Adam said something when he came home that was the trigger to our fight, he hurt me for the last time on the things I do just so he is happy, he questioned me but not with a question an accusation. I tried to ignore it at first, as I always do, but later on he said something in the same tone again and I blew up.

The trigger were the windows, we have always disagreed on when they should be open or closed and as a compromise I try to put up with them being open in the Summer and he tries to put up with them closed in the winter. His incorrect accusation was that I had just opened them before he came home and that they had been shut all day. It sounds stupid in some ways but I told him that I had the right when he isn’t at home to have the windows shut and that his exception me to have them open 24/7 even when he wasn’t there was not going to happen any longer. Slowly it expanded and I told him that if he didn’t like it he could go, but he had better be sure and to always remember it was his choice. I have never known him go so silent so quickly before. He realised that I was serious.

It didn’t end there, where it ended was my when I said that it had to change, everything had to change, our lives could no longer be Adam messes something up, but that didn’t matter does it, because Pam will fix it, Adams world isn’t perfect but that doesn’t matter, because Pam will fix it, Adam wants something and Pam will get it. That I wasn’t able any longer to fix my world, and I sure as hell wasn’t able to fix his.

He got the message, nodded his head and said that I had put it very well and he got it. We had to get to that point last night, we had to argue, we had to shout at each other, as we had to say all the things that were said as well, I think we had for far too long still been acting as though things have gone OK on the surface, so why admit it wasn’t OK below it. It hurt me terribly to admit that, to actually say out loud that I can no longer fix everything in our world, I can’t keep up with making things right, not just for both of us, but even for me alone. I am not able any longer to be that person. I am incapable of doing any of it, and he has to now step up to the mark and take it on his shoulders as I can’t. It was and still is an extremely painful declaration to have to make, but I do know that I had to, not just for Adam to see it, but also for myself.

Adam is asleep just now, but when I got up the kitchen was tidier and all the windows were shut. I am awake and still morning my loss of me, the china mask broke and fixing it well I don’t think I can, or really want to, I don’t have the energy to piece the bits, some to small to see back into place. I think I need to face life without it and at least now we both know it is gone.