Control of me

I took sometime yesterday to sit and think through what happens now, it is clear that somethings have to change as I really am getting worse and worse when it comes to all the cognitive issues. I haven’t spoken to Adam about this yet and I know he will read this tonight but I am hoping to find the spot to talk this evening when he comes home. Why I didn’t sit and talk to him last night, I don’t know, that in itself is an example of what is wrong, I could have talked I just didn’t do it. I am just not doing things that I know I have to. It is almost as thought I am not doing anything other than sitting here on my PC, not because I don’t want to. or I don’t know I need to do things, but they just don’t happen. Take phoning to book an ambulance to take me to the hospital, I just stopped right now and did it, I have had 2 months in which to make that booking and although I wrote about it yesterday and I spoke to Adam about it, I didn’t actually do it.

I used to be so totally organised in life, everything was planned and ready long before it was needed so to me this is completely alien, the phone call is just an example and I have to say probably a bad one. I am going to take a deep breath now and make a painful admission, I am also avoiding all the daily things. I often now don’t shower for a couple of days or so, partly because it is an exhausting proses and partly as I have done nothing to get me into a condition that needs showering, so I just don’t do it, not the worst thing I know, but the next bit is. A few weeks ago I could smell something and I couldn’t work out what it was, I couldn’t find anything at first, it took me two days of checking and fixing different things with no real result, then I found it. When I had been showering I hadn’t dried myself properly, there is a fold of skin that was caused when I had my hysterectomy. Ever since it was formed I have had to care for it and I haven’t been. What I was smelling was my own rotting skin, it was raw and weeping. I had felt nothing and if I hadn’t smelt it, well I could have been in trouble, I actually don’t remember when I did last pay it the attention that I know it needs, even now I haven’t done anything since I was sure it was cleaned and healed, once again I have been ignoring it. I could probably sit here and go through a long list of the things I should do that I haven’t. I know Adam is well aware that I forget to eat and he checks all the time that I have, not that a few days without food would do me any harm, but short of him sitting with a check list and going through it with me each day, I don’t see how to get control of all of this.

I don’t want to be treated as a child, but I for the life of me I don’t know how to get round this muddle that is appearing. On the surface anyone would be forgiven for thinking that I am coping doing all my daily tasks, the truth is that in the main, my way of coping is to simply not do it, and then totally forget about it, job done. This was all part of what happened a the other night when I screamed in my head “I am still here” I am not just loosing the things I wrote about the other day, I am also loosing the ability to look after myself when and how I should. This is in some ways harder to admit because I find it repulsive that I could have let my personal care fall so far, that my skin was rotting with no real reason behind it. One thing I do know is that it isn’t laziness, it is just the same as loosing concentration in what I am doing, I just forget to do any of it, distracted by everything and nothing. None of this is me and I can’t without giving up all control see away of sorting it. When your mind has slipped so far that it is content to be the total opposite of what it has always been, how do you fix it. I know what is wrong, I can say I will get it all fixed right now and by tonight I will still have done nothing and be totally unfazed by it all. I have lost control.

I can’t explain in any other way why all this has happened, other than to say I forget, but that doesn’t really describe it at all. If you forget you put it right when you remember, but I might not remember for days because life and exhaustion is my distraction. This is why I need to talk to Adam tonight, I need to work out with him away of getting even these simple things sorted before something I “forget” actually does me some real harm. This isn’t going to be easy.

On going denial

One week on and my back is still hurting, I have to admit it is better than a week ago but I really did think it would have gone by now. Adam is back at work today so normality is once again restored in the home if not in me and yes I did make a start yesterday with my writing so I am no longer looking at a blank page if you like, I guess that unlike this blog I will do a lot of rewriting as this is daily I don’t really have the time to do that, I write from start to finish then check it over to ensure it will makes some sense to the reader, part of me thinks I should maintain that style, but it is hard to for some reason.

I have found myself thinking a lot about the post I wrote the other day about my decision that it was time for me to stop using the cooker without Adam in the house, I’m not going back on that decision but it has left me wondering how many other things will appear in time that I wouldn’t be able to do safely. We already had to change the bathroom from an over bath shower, to shower cabinet and I at the same time managed to get a raised toilet fitted so our bathroom which should be safe and easier in the years to come, although I know Adam would still rather I only use the shower when he is here, which I admit will probably have to happen eventually, but not yet. The two rooms that I guess will have to be adapted in time are out living room and bedroom, at least the bedroom will be a case of changing the bed for one that is easier for me to get in and out of. This week while my back has been sore I have had a great deal of trouble getting out of it, although I have managed with a slide and twist. It has opened my eyes though to the needs of the future as my muscles weaken all over I won’t be able to do this by myself, and I need to, as I sleep not only at night but in the afternoon as well. I hate the idea of having a practical bed rather than one that looks good and fits exactly into the space, any change in size would be a big issue as our bedroom isn’t exactly huge, there isn’t a spare piece of flat wall anywhere other than at the door as we have two wardrobes and two draw units that fill all the space to the centimeter. Change anything and something else would have to go and them what do we do with our belongings? In that respect I realise now that I should have done more work on the house when I was still working and had the money to, but no one expects to be made redundant and unable to find another job.

Like so many other people these days we would need a lottery win to be able to do everything that would make our home a better layout for going forward, as yes there is probably a few changes needed in the living room as well. I suppose I didn’t do it as like everyone else there is a denial that goes on for ever, I still find it hard to get my head round things like the cooker, I had the idea in the back of my head but my expected dates for any of them to be still years away. So how soon could all the other ‘one day in the future’ items actually arrive? It is easy to say ‘I wish I had’, but it really was bad planning and huge denial on my part. If I could go back and sort out all these things, well I would, and I would now have a home that I will be happy with how it looks going forward and would also be adaptable. Anyone out there heading down the same path please think and act now while you can, not what I did, blindly head onwards with blinkers on to the future.

I suppose that denial will continue regardless what I do or what I try to do, and the reason is easy to explain, no one wants to picture themselves becoming more and more pathetic and frail, but that is my future and I don’t deny that, I just deny the timeline it wants to take, as it isn’t the way I want it.

Expectations of free thought

There are so many things in life that we all make plans to achieve or attain, things that are often unspoken but are expected will happen, we find partners and our own homes, we work and earn money to afford our chosen life style, yet none are constant topics of conversation we are all aware of there existence. Within these expectations there are universal ones, ones that are there for us before we are born, we walk, we talk, we learn and we grew. As we grew we moved to the higher expectations and I suppose a good example is that of children. Our parent never sat down and decided to become grandparents as their primary goal, they simply wanted to be parents, but without it being said, we were born with the expectation that we would one day also be parents. Universal expectations cover so much of our lives and they are the ones that no matter how far back in human history we look, they are there.

These expectation are a good start for anyone to build their lives around but there is absolutely no reason to hold to them, should we choose not to. I, like many, without great conversations and extensive thought, followed and fulfilled those expectations, looking back I am amazed at how little thought really went into any of them. MS has made me realise just how much we take for granted, we act on enormous decisions, as though we had picking the answer by spinning a coin. I find that I now put more thought into standing up and moving, than I remember taking on how or where my baby would be born, I did what everyone did, no thought, just follow, I can’t do that any longer. Standing is a process that needs planning, why am I needing to stand, where am I actually going and what am I going to do there, is there more than one thing I can do at the same time, and do I have to actually stand at all, is the purpose of my movement a good use of my limited energy, is there a way to group things that need doing, into one session on my feet. I plan how to place my hands to aid my lifting myself to my feet, I place my feet in a position that should cause the least pain, then stand, steady myself for a second before taking that first step. My universal expectations no longer exist as they do for most my age, they stopped and where replaced with daily or even hourly expectations.

There is so much that has to be considered and analysed in just the simplest of actions, I no longer can do anything without thought, but because I have now been doing it so long is has become a habit. The calculations sometimes go wrong and occasionally I find myself standing in the hall in pain and unsure as to the action that I should do next. My body will be screaming stop don’t move, but I will be needing the toilet and to fill my glass with coke. Returning to my seat now could be worse than pushing on, sitting down now would mean having to stand again and complete what is needed. The choice is a hard one.

A progressive illness is filled with choices that others would never actually think about, and the word progressive is the clue to reason. Today I have my action plan for doing something and that plan works, tomorrow it may not and the process will have to be thought through and change. Everything in my life is in the now, as 10 minutes from now it will have changed. This level of thought applies to everything, what height my plate must be so I can move the food to my mouth and not drop it, how I get in or out of bed, it goes on and on and the changes continue to go on and on.

Free will and free thought are wonderful concepts, but an illness can remove both at the existence level first, and the levels of restriction rises as the illness progresses. I know there is a point when both will be a distant memory, if there are any memories at all and strangely as I move towards this I become less scared of it. I used to think it would be terrifying, but as I loose bits, and occasionally find them again, the fear has lessened and the acceptance has increased, just as the contentment to accept has.