It’s time

There are just a couple of days until Teressa and John are here for a few days and I am already getting myself in a muddle, from what I need to plan, like meals and ever to what day they are coming across to Glasgow to see us. I think I freaked Adam this morning as I told him that it was Saturday, he has planned out his tidy up of the house for them being here on Sunday, something I only remembered after he had gone to work. It is always the same, even when I have time to plan a change to my routine, I still get myself tied up in knots. I keep trying to work out how I might be able to work ahead of myself as far as it goes with everything I do online, something I know I shouldn’t be stressing about at all, I should just be telling people that I am taking a day off here and there, but I, of course, won’t be. One of the comments I received the other day said something I know and I have always known, that I should make time to just chill and not push myself every day to do more than some people who are fit and healthy would do. It isn’t so much that I can’t give myself the space or permission to do so, it is far more a case of being scared of stopping, even for just a day. All my siblings are just the same, work, work and more work, then possibly a small space for life every now and then. It is really hard for someone like me to ever stop, but when you have a grandfather who never took a day off his entire adult life, not even to get married, he thought 3 hours was all that was needed. Who collapsed in his office in the shop aged 78, fought against being in hospital, but then in his head turned his hospital room into the shop, telling people to straighten pictures, wind clocks and so on, before dying of the cancer not even he knew he had, still insisted that the shop had to stay open regardless of death or not, might just explain where I get it from. But there is one other thing that drives me daily and I know it is as silly as it gets, I am scared that if I take time out, I will lose track and be unable to ever catch up again, I would be left swimming in a huge muddy puddle that would just suck me in.

The last few days I have written about the medical changes and some of how they affect me, but just saying that it scares me is like saying I woke up today, when you are losing your mind and your health all in one swift move, you build system, ways of continuing, of holding onto the reality you have, which is why all the stepping down in the amount I do is always painful, it is like documenting your inability to cope with life. Two years ago my daily output was more about three times what it is now and to make it worse, I have written about the entire downwards journey so that I and everyone else can see how far I have fallen. The balance between wanting to build a record and telling the world you are disappearing as a person is so fine that I cross it almost daily, my strength is limited, I am human, not super human and at times what I write hurts, it really hurts. I guess I am about to document a new phase in my illness, one I have shied away from because of that hurt, as I actually have to admit that I have reached a point where small tweaks aren’t enough and I need to make bigger and bolder ones, but what? This is one of the bummers about being ill, it isn’t like I have a choice in any of this, if it was just about choice, I would work faster and harder and I would still be doing everything I have ever done, but it isn’t that simple. My health has removed one of the things we all believe is ours by right, choice.

When did I last have a choice in anything, I don’t choose when I want to go to bed, when I get up when I eat or even when I fetch a drink or go to the loo. Everything in my life is planned, part of a routine, what has to be done and what needs to be done, all governed by my fatigue and pain levels. MS demands routine, push it, make a wrong choice and the result is exhaustion and life grinds to a halt, taking days to recover, so everything has to stay the same, measured and precise just to stay where you are. Progressive conditions still progress, it doesn’t matter how hard you try to keep your life level, they just keep eating away and eventually they make you oh so well thought out and tested routine, wrong. Well that is where I am, my routine is now wrong, I am doing too much every day and I am constantly playing catch up, but I never actually do, I just lower my standards, not just to second best but in time even sixth or seventh best. Where do I start? At this second I don’t know. I just feel rather lost after letting all that out. I can’t find one single answer other than I need to sort it and I need to rebuild it all, life has to change, but it also has to go on.

Please read my blog from 2 years ago today – 01/08/12 – A wedding to plan

I start today with some good news, you may remember that my daughter Teressa returned to the UK just a few weeks ago and her partner wasn’t allowed in and had to go back to the US, telling the truth caused them a lot of pain and they have done what they can to get back together with little luck. Being forced apart like this has though done little other than to make them realise just how much they…..

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……





Slow down not stop

I often find I write not remembering that everyone doesn’t know me as a friend who visits my home, so when I wrote the other day about the possibility of some sort of alarm system, I omitted to say that moving around with a mobile in my pocket isn’t an option at all, well not unless I intend to spend my entire life 6 inches from the front window of my living room. There is something odd about living here which we didn’t discover until after we had bought and moved in to the place. We are in some sort of black hole in the world of communications. I don’t know about the new digital free channels but without sky we had no TV and no ones mobiles worked at all, regardless of network. We tried to get it fixed but every agency we contacted confirmed that we didn’t exist to the signal system, being down at the lowest point for miles, and surrounded by high trees, we are clocked. With the new signals, and improvements from the mobile companies, you can now actually stand 4 feet in from the front, but still no further. I do already have walk about phones, with one in each room except the bathroom, but I find them really big and difficult to use. The big bit is good as I can see the numbers, but the bad bit is everything is on strange little menus, that work from fiddly side buttons and lack all forms of logic I have ever discovered, hence the post as to what to do. Why are the so called simplest things, always the most difficult?

On Sunday Adam managed to sort out the electrics so that the delivery men who brought the mattress elevator could return and fit it for me, so I phoned expecting it to be straight forward, why I thought that I have no idea. The call started with a huge list of phone options, which not one matched the reason for my calling, option 9 eventually appeared and it was the one I seem to always need, “any other reason”. A young sounding girl answered promptly but couldn’t seem to grasp that it wasn’t fitted when they were here, but once we eventually got past that point she then told me that she had to contact the OT and get them to put a note on their system before they could come back out and do this. So it could be ages before anything happens, as when ever the interaction of different departments is required, nothing ever seems to work with any fluidity.

I have become really aware in the last few weeks that I am slowing down in so many ways, having cut out two blogs from my day and reducing my twitter activity, I am getting thing completed a little earlier yes, but not with the huge amount of time I had expected. All the changes have found me with less than an hours free time, it would now be impossible for me to fit everything back in again, I would need a free 3 to 4 hours, which I don’t have. I know also that I have continually written about the amount of time I sleep and the little time I have to do anything not surrounding my PC, especially the diminishing time that I have to spend with Adam. No matter how I look at this, or how I try to sort myself and my routines out, or how fast I try to make myself move, or even try to work more efficiently it has all failed. It is all coming down to me, not how I work but what I have inside myself to give, as in energy to share if you like. I still have as much as ever inside my head and heart to continue sharing for years, but my actual energy to get all of that out and into words for others, well that is what is failing.

I feel almost as though I am in the transition to a new phase of all of this illness muddle. As I tried to explain yesterday there seems to be steps, as each one is taken there are adjustments that happen outwith our control or conscious thought, we let go of friends, as we don’t have the energy to give to them. It is a little like nature knows the way these things work and there is a balance through out that takes away the pain and allows the steps to happen. My body and nature have taken the steps to get it through to me that I am slowing down, that this is the time to accept that sleep has to be taken, be it an hour or 14hrs, if I sleep then clearly I have to. Physically and mentally I can’t keep up with what I want to do, but when I stop, I sleep, if I fight against it I become exhausted and suffer for my stupidity of fighting against it, nature is forcing these points and I guess that is just where I am now. Like everything else I can’t say if this is it for ever, or if this is it for just now, but the weeks are starting to add up and nothing is showing a change on the upside.

My world, my life is slowing down and nothing will speed it up, or give me back what has vanished, I guess I just have to accept it. I will check, try things and see what happens, I’m not writing anything off, but I think that I have to start facing facts and accepting them.