At this second in time I would just love to have a little consistency in my life, yesterday morning I ate my breakfast without the slightest problem, this morning, I managed about half. Why that annoys me or even surprises me I don’t know, consistency has been missing from my life since my very first flare, life in the unknown zone is the only consistency there is once your own immune system has decided you are an alien to be destroyed, mind you I have also been aware most of my life that an huge number of people would agree with the alien bit.

This week is going to be an odd one, as Adam is off work for the whole week, once again they have been pushing him to use up his annual leave so he has this week and a load of days here an there off through the remainder of the year. I didn’t see that much of him yesterday as he hid himself away in the kitchen working on an essay for his college course, it’s odd how life travels in circles, nearly 30 years ago I was in the same position with a husband studying, at least this time I don’t have 2 children under the age of 2. When I went to bed he announced that he was on a role and really felt he was getting somewhere, when I woke at 5:30 am to go to the loo, he was still in the kitchen working, with no intention of calling it a day. I used to be like that, unable to stop doing something and totally disregarding the clock as what I was doing was just to important to me. I have to say in a way, it made me proud to see him applying himself to his work, education was something that had sort of escaped him, even when he went to college after he left school, it turned into one long drinking session, which was still going on when I met him. It’s strange, but I actually envy him, I had had plans so many times to do a degree or college course, but it never happened, now, well I have the time, if I stopped everything I am doing on line, but I now believe there is more to gain here than there is in having letters to add to a grave stone. Adams HNC course had nothing to do with me, but I did push my first husband and many others in to education, in fact the company I worked for, for 13 years before redundancy was a distance learning company, selling courses from hobby to degree and I sold my share of them, in my first role with them. Yet here I sit without any qualifications, unless you count a handful of certificates from when I was working in the hotel industry, I’m a qualified cellar person and keeper of real ales, not much use these days. Outside of those I taught myself everything I needed to know to get me work and through life in general, so many people always assume that I have some degree or other, or that I must be well read at the least, the truth, I haven’t read a book since my first marriage ended and what I did read was mainly science fantasy, not much of everyday value there really. I honestly believe that we can make ourselves what ever we want to be, but not until we are past the age of 25, after that, well no one ever actually asks what qualifications you have, they just ask what can you do for us, then us for you.

My problem with time seems to be getting worse again, I haven’t for months now been able to hold on to the correct time of day, or what is happening at what time. I’ve mentioned it a few times in the past few months, like the fact that Adam now has an alarm set on his phone to make sure that I take my medication at night. I know that I have been taking them for years, but for some reason I started to forget to take them, then would lie in bed in pain trying to work out what was wrong with me. Some days I remember but recently the occasions of Adam telling me to move or my staring at his phone trying to remember how to shut it up, are increasing. In the past week it has been 4 evenings out of 7, that I have blissfully just sat there unaware of the time, but the issue is growing and I am not the only one noticing. The most obvious is my total lack of ability to work out the length of TV programs and how many we can fit in between 7pm and 9pm. I know just how stupid that sounds, but I do it again and again, even when I try hard to make sure it doesn’t happen, it is Adam who has to correct me, or even tell me to go to bed as 9pm has arrived and no we can’t fit in a third one hour show. Yes, I can and do make a joke out of it and Adam has repeatedly told me that “it’s not stupid at all”, but that is how it makes me feel, it is the kind of mistake that not even an average nine year old would make, unless they were hoping no one would notice and they would get to stay up later. You might wonder why if I want to watch something more, don’t we just do so, easy, I wouldn’t reach half way through without going to bed and I would be dead the next day. On it’s own it may not sound like a big issue, but it is one of many examples of how my brain is vanishing.

I have always been bad with names, but not like I am now, it has got to the point that we can be watching TV and talking about it and I will not be able to find the name of the character who is on screen that second, in a program we watch nightly. My sitting there pointing at the screen and saying “thingy, there, him right there, what’s-his-name, you know” and feeling myself getting exasperated with myself, is now a nightly event. Adam is incredibly patient with me, but I know it must get to him at times, just as it does to me. Like everything else, I have good days and bad days, but a good day might mean it happening twice in a night, on a bad it’s every second one and I just shut up, well when you can’t talk, silence is your only option. Trust me silence is easier on me too, as it’s clearly not just names, the times that I can’t find the next word is growing as well, once the frustration starts to build, I then start to stutter and the whole thing turns into a nasty mess. I did have one triumph last week, I managed to book the ambulance to take me to hospital next Thursday, Adam booked the last one, but I decided to do it and despite of the stupid press button system and the same stupid questions they ask every time I got there without getting wound up. I actually think it was helped by the fact the guy on the other end couldn’t pronounce the name of our street, it Scottish and a bit of a tongue tier, so we sounded as bad as each other.

I can still laugh at myself and the mess that I call talking, but when you feel fine inside your head and words can pour out of your finger tips, only getting stuck once or twice in a couple of sentences, to then find that your mouth is your obstacle to the world, is painful. My voice has been the one thing that made up for my lack of education, I was given election lessons and with a relatively soft Scottish accent and a fast brain, meant that being a DJ, or a sales person were perfect roles for me, when I started to stutter and get tongue tide, selling was clearly no longer my forty, but my logical mathematical brain took over and took me through to the end of my working years as an Operations Manager for the same company. Just the idea now of sitting in a boardroom meeting would be laughable, I never once thought that of all the things I would loose this would be the one that is the most life changing and the most devastating when it comes to me, myself as a person. Next to our appearance, how we sound, how we put together our words and express ourselves, well they are us, loose it and we are loosing ourselves.

Read my blog from 2 years ago today – 2/11/12 – The visit >

2 thoughts on “Silence

  1. Its a tough and selfish world but somehow we have to wake up each day and take something positive from it to make it all worth while. In the last 2years life flipped for me after suffering a AVM which was effectively a stroke, then exactly a month later a second one as unexpected as the first, many months in hospital and a huge weakness in my left side left me in a place so dark and alien it almost was to much. Now almost 2years later I am back in work only desk based but that’s ok , I still have weakness in my left side my left arm and leg are still not working like the should be but I am managing a kind of walk ok, Insparation is a great and powerful medicine and add a little motivation and stubborness and you have the will to improve, I am thankful that I do have the capacity to improve although I have been told it may take a few years maybe up to five but I have no option but to let my body and mostly my brain heal! We are all blessed with life but often cursed with the interruption of nature with its unwelcome illnesses but what options do we have, One of my strengths is not to quit and I won’t, now that the clouds in my head are clearing a little and things become less scary each day. I used to say that I had monsters under my bed referring to the darkness in my head
    I think now they are gone!
    Let’s keep looking forward to waking up each day!


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