It should be simple

Two days to Christmas and the world has gone quieter on line than I have seen it for a year. It seems that the majority of people in this world are too busy running around the world chasing all the things that they believe essential to make the day perfect. It took me 50 years to realise that the things don’t make Christmas, oh they make us feel good and brighten our homes and cities, but it is never the things that make Christmas and it is definitely not the exhaustion, stress or panic so many put themselves through. Our Christmas, complete or not is due to arrive this morning in the back of an ASDA wagon. It took me five days to complete my order, not that it is huge or anything, it was because of my terrible memory. I actually started 4 weeks ago by simply making sure I had a deliver slot booked and held for me by selecting my chosen day and time and checking through a carton of cigarettes, then totally forgot about it. Last weekend when I started to sort the whole thing out, followed by 4 more amendments of the things I had forgotten or changed my mind on and with no effort or extra cost. So when the doorbell goes, I will know what we have in the house for Christmas and exactly what we will be eating on what day, well there are sure to be some substitutes, but it was last night that made me totally not care what arrived or not. I had spent the afternoon watching the news channel covering the horrendous news about the six people killed in the city centre when a bin lorry ploughed into Christmas shoppers. It was horrendous that people who were out gathering their bits and pieces to make their celebrations what they wanted them to be, had died just because they were walking down that road at that second. I didn’t hear about it until I woke up from my nap and like many I listened to eye witnesses and watched the footage going out live of the aftermath as I went about my normal daily tasks. As terrible and as sad as it was, it wasn’t that that made me not care this year, it was when I heard in the evening that my son Christopher had been on the very same street as it happened and had witnessed the whole thing, fate was the only thing that saved him from being part of it, Christmas this year could have been very different.

Last night was actually a bit of an odd night all round, Adam and I sat and talked about things that had nothing to do with the TV for once, we talked about the things we never talk about, like money and our lives. I guess we are just the same as most couples, we don’t often talk about the things that are actually really important, the things that make us work as a couple. It’s odd how easy it becomes to just live around each other, I don’t mean that we love each other less as that never seems to change, what I mean is some subjects become the unspeakable’s the things we avoid, as discussion is too difficult. A few years after our marriage and after my diagnosis things went very wrong for us, I would go as far as to say that to me it felt as though one point going in different directions and money became an unspoken monster. From then on I actually avoided talking about money as it always caused arguments at worst and frosty silences at best, so to talk last night freely and on the same page, was actually wonderful. With Adams debts now cleared just a few months ago and my cutting down on my cig’s, well we actually are both on the positive side and it feels so good. I guess it was the breaking of that monster that let us continue to talk, as it really does feel like the third person in our marriage has finally moved out.

Talking always seems on the surface to be the easiest thing to do, but in reality, it is the hardest and often the most painful. When your emotional controls are shot and tears happen without any invitation, it also become something that I now think both of us avoid, me because I don’t want to spend another minute in floods of tears if I can avoid it and Adam because he doesn’t want to make me cry. There is something about tears, even when you know that they don’t mean what they do to all other people on the planet, they still somehow start to feel real to both of us, when they truly mean nothing. For me they also have this horrid side effect that I noticed a long time ago, once they start they pull with them a feeling of deep intense emotion with no root cause, that makes them flow even more. It is almost like the whole system has flipped as emotion should surly come first and worse still, just like sever pain leaves it shadow, so do tears and their emotional bomb, they are still returning with ease. My body is so mixed up at the minute that I don’t quite know what it is going to do next, I honestly feel as though I am in some kind of horrid fairground ride, as my symptoms are flying at me in some many different directions all leaving me feeling in rather a mess.

On the good side I have started to sort out a new daily plan and I am getting results, I am starting to free up time and that means I have more time to rest and time to start recovering and becoming myself again. I have high hopes for the next few weeks as things start to slot together again, but like everything else in life, time will tell.


Please read my blog from 2 years ago today – 23/12/12 – Lifes routineĀ 

A late night last night as I had to force myself to stay up and what the final of Strictly Come Dancing, well after watching for 3 months I wasn’t going to record and watch it today was I. I actually pushed myself last night as I started by eating too much, yes the Christmas menu has started. I had bought some great little…..

Don’t go there

Distraction, seems to be the name of the game today, anything that my mind comes up with is suddenly a valid reason to not do what I am supposed to do. There are two types of lack of concentration, one belongs to my mind, as in the one I have today and the other belongs to my eyes, that’s when I see something and just have to check it out, regardless of everything else. In some ways I prefer it when it is in my mind, this one feels more natural, the type of lack of concentration that we all live with through out our lives, it just severally amplified. In the past it was more controllable as in I would think of something and make a mental note to see to it later, these days I still do that, it’s just later is now only seconds rather than hours, the time ratio seems to be screwed up. The problem is though of course as all of us with memory issues, if I don’t do it straight away, I either forget forever or at least I think I do, or at until something major reminds me. That is one of the issues with memory, when you forget, unless someone else is monitoring what you are doing, you don’t know if it’s just you forgot or is it that you never even thought of it in the first place, you don’t normally forget that you forgot. Slowly life is getting more and more confusing.

It may not sound like much but when your mind gets into a spin about something, it really is impossible to stop it questioning and questioning itself until you feel as though you are spinning round with it. For some people I know all those memory tricks and safeguards work well, but as I have said many times, they don’t work for me, I seem to have this blind spot that treats anything other than my once perfect memory as an insult and something it is just going to ignore. I can still see my work PC, the entire screen frame was covered in sticky notes, all there to help me get through my day, but all totally ignored even though I couldn’t work without seeing them. I also had so many alarms set that I got the point where if for some reason I was running behind, I would be almost in tears as everything was shouting at me and I couldn’t get the concentration just to complete the task I was on, without being told over and over about the tasks still to come. Living inside a brain that just doesn’t do what it once did, is at times highly destressing. I have lost count of the times I have wound myself up into a complete mess just because I can’t find something, or work something out that I know is so simple. I guess that it is no surprise that MS and Parkinsons share a lot of symptoms, what a lot of people who don’t have either can’t understand is just how our brains work as they go into free fall and just how difficult it can be to pull yourself to a halt and move on. I have to say that is actually far more upsetting than just forgetting to do something or loosing track of what you are saying or even thinking.

I think the first sign to me that something was wrong with me, not just my memory was when it went into one of those flat spins and I was sat totally terrified and unable to move. I still remember just how scared I was as I didn’t have the slightest idea where I was or what I was meant to be doing and I was actually in my office at work. The office had been reorganised over the weekend, I knew what was being done and where my desk was to be, but when I arrived I found things hadn’t gone to plan and my desk was in a completely different place. When I sat down at it I was lost, it was as though I had never been in that room in my life, as though I had worked into the wrong place and I wasn’t meant to be there. When I stepped out of that space, all was well, but when I sat at my desk I couldn’t stop shaking and I was truly terrified as I couldn’t deal with not knowing where I was. On one level I knew where I was, logic said this is your office, but on the level that matters the one that we judge reality on, I was in an totally alien reality, somewhere I hadn’t been before and worse still, I didn’t know how to get back. I know it is hard if this has never happened to you to actually be able to understand, trust me it is also something that is really hard to describe and to tell anyone as you feel as though you are opening a door of lunacy that can’t be closed if you speak about it. I know from that day that people can’t get their heads around it, I couldn’t hide how I felt, you would have to be the world best actor to cover that up, pure fear is recognisable to everyone. I tried to explain it to my assistant, but she just kept looking at me as though I had totally lost it and went and told my boss, who equally looked at me as though I was mad. I spent 4 hours sat at my desk holding onto it occasionally or pinching myself, trying to find something that would let me move on and be part of life. I lost count how many times I left my room and walked round other parts of the company or went outside for a cigarette as every where else was normal, it was just my office had moved to hell. It has happened several times since then, sometime my mind has added in an other dimension by trying to tell me where I should be, like very helpfully suggesting I was in the wrong era and I actually belonged back in world war two, but how ever it appears, it is incredibly frightening. We all trust our own minds, as it is us, so to find it is lying to you and that is building something that doesn’t exist, is highly confusing. The worse the confusion is, the more it tries to create a reality that it is happy in, just not the one that it sees and knows is there. I have no idea what triggers it or what ends it, but what I do know is no one once they have been there once, would ever want to return.

As a teenager in the early 1970’s like many I played around on the edges of the drug scene, I quite openly say that I tried LSD several times, but I mention it now as it doesn’t matter what freaky things that it might do, it has nothing on what your own minds can create or destroy with ease. The good thing about LSD is that you come down from it and arrive back safely in reality, when your mind destroys reality, you don’t know if you will come back, you could be stuck there forever. Neither I or anyone else can jolt me out of it, it seems to be something that so far has sorted itself and at worst had lasted about a day, but as with everything else in PRMS I can expect it to get worse in the future, I honestly fear that happening more than I do of loosing the use of all my limbs. Thanks to TV I have seen similar things happening to people with dementia, Parkinsons and Alzheimer’s, people totally lost to reality and living inside one of their own, the damage being done to my brain, must be similar in some ways and yes is totally in line with what PRMS does.

Our minds are somehow capable of doing what ever they want without our permission, they can forget, confuse and even create without us having control of any of it. If you are just forgetting the odd thing here and there, well you are normal, that horrid word again, normal what ever that is, but when it goes out of it’s way to make our lives difficult well it’s no longer funny. I am never sure if getting glimpses of what this illness can do to me is a good thing or a bad one, but what I do know without a doubt, being forgetful and having poor concentration, is something anyone can live with, no matter how annoying it might be. When it comes to the more sever things it can do, well I don’t want to go there again even for a visit, to go there and never come back is something I don’t want to even consider. There is nothing I have ever known like that clawing fear and a confusion so intense that you fear your mind is falling apart and that the future holds nothing that will ever be real again.


Please read my blog from 2 years ago today – 3/12/12 – Accepting Christmas and more

Monday morning and I woke to two legs in spasm! Since Friday they have been bad again, I had been lucky and they had settled over November just the odd spasm, rather than having the odd period of normality. All weekend they have been driving my nuts again, no position to sit or lie in where they…..