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…..

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