I don’t know what you are saying

I am once more sitting on my blow up cushion, it is actually now the third day in a row when sitting is an issue. It has to be one of the most unfair things about an illness like mine, I can’t stand or walk around for long so I have to sit, but sitting is too painful to manage, not just because of my backside but also my legs. It seems that sitting adds pressure to my some nerve grouping and once triggered then goes mad making my legs so sore that I often dream of being without them. I know it comes from sitting as it is a clear pain line, it travels not just down the back of my legs but also the outer side of them, trust me there is nothing like nerve pain, it has a distinct way of cutting into your mind that means there is no escaping it. I get a lot of pain in my legs directly from my MS, pain that normally I can deal with, but having this on top is just too much. Just as you might have a pain somewhere that makes you sit in a different position, you know that in time other pains will appear simply because you have been guarding one area and therefore upsetting another, it is a constant problem for anyone with chronic pain, a loose loose situation with no chance of changing the odds.

I know that you don’t have to be chronically ill to have those type of issues, but at times it just feels as thought the world is piling up as many things as it can possibly find, that you can’t do anything about, simply because you are overwhelmed by it all. The problem with illness is that it weighs the odds against you before you even start. I try hard not to be tied up inside and to always have time for anyone who needs me, but I have noticed recently that I am finding it hard to give my full attention to anyone or anything. I always managed so well in the past to multi task, to be able to hold onto a conversation whitest doing something else, but that ability is getting less and less. For several months I have been finding myself knowing that Adam is talking but I haven’t the slightest idea what he has said, I constantly have to ask him to repeat as his words had somehow missed their target, me. It’s not just when I am writing or watching TV, we can be sat right beside each other, in the middle of an on going conversation and suddenly I’m lost. It happens all the time to myself, I almost always loose the thread of what I am saying and land up in a stuttering mess, but now I am loosing the thread of what others are saying. My mind has taken what was a personal problem and turned it into a universal one, as it happens with TV programs as well, suddenly I loose the plot and have to fight to work out what on earth is going on, all to often I give up and just leave it as a noise in the corner.

The TV doesn’t matter, but Adam does, I am sure at times he thinks I am just not paying any attention on purpose, but it just isn’t like that. My MS has taken over interrupting my thoughts and blocking my understanding of what I am hearing, even when it is really important that I do listen, that I do give my full attention and that I am centred on every word, I am suddenly lost. The words are there mumbled and faded, their meanings and importance lost in a muddle of sound and I can’t find any sense or understanding and I am forced to ask him to say it again. Now that mess can be useful, especially when he is rambling on about some air planes or car, but when he is talking about feelings or work or even family, well it’s not just rude, it scary. At first I tried to rationalise it, putting it down to his timing of when he wanted to talk, as my brain was busy doing something else and just didn’t grasp just how much more important he was at that moment, somehow the switch between the two just wasn’t working as fast as it should. The other night he needed to talk, it was something really important to him, but I just couldn’t keep my mind on what he was saying. I wanted to, but it wouldn’t obey and produced this muddle of sound that I couldn’t sort out and again and again I had to ask him to say it again, or I asked a question based on the last bit I remembered, to get him to repeat it.

Yes once again I am writing this because I know Adam will read it, as once again find the words and the ability to sit and explain it all, is far easier here than it is to sit and talk about it. I can only guess that my concentration and attention spans are getting shorter and shorter, hence why I am always rereading and retyping as well, but talking is so important and conversation even more so. I am caught in this mad world where my brain won’t do the simplest most basic thing, show respect for the person I love. I guess we all accept concentration blips, those sudden moment where we are lost or somehow doing something else than we intended, they are all just part of this mad disease, but I didn’t expect that I would never be able to just sit and listen. I have got used to not being able to talk, but listening, just listening is supposed to be something so simple that anyone and everyone can do. Once again I find myself discovering something no one ever told me about, or even thought of preparing me for. Maybe to others it is a logical step, that loosing concentration when working, reading, watching TV or anything else, actually includes loosing concentration with those you love, I just didn’t see it coming and now it is here.

It feels as though every few weeks for the past year or so I have found something I didn’t expect, something has changed and caused something else and I can’t find any way of dealing with it other than to write it all here and hope someone out there know what I am talking about, or that I am at the very least giving a warning to others that this may also happen to you.


Please read my blog from 2 years ago today – 15/03/12 – Do we really think or choose?

I was sat on the settee last night watching TV, well not really watching, more facing in that general direction, with my mind a million miles away from the program that was on. In itself there is nothing odd in that, I’m sure that millions of people do exactly the same thing daily, but I actually questioned what I was doing and why. I was sat there because that’s what we do, no great plan or decision process had gone in to it. No thought at all in fact. The only decision making process that was involved was to watch what we always do or not. So much of our lives are lived……





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