I have found myself once again playing games with myself, every time it happens, I tell myself that I am not going to do it again, but time always shows me that, yes I will. I often wonder if it is either that I don’t like admitting things to myself or if it is just that my brain has once more chosen to shut out the truth, because it just doesn’t want to deal with it. Over the last few days, I have once again been having problems in holding on to conversations, Adam gallantly as always has been apologising for mumbling, but he isn’t it’s me. You see it is easy to tell them apart, as I can’t actually blame the TV for mumbling can I. I had actually been really pleased with myself over the last month or so, as I had seen not so much an improvement, but that I was in a spell where I was picking up on the fact I was drifting sooner rather than later, when I would find myself so lost that I couldn’t even work out what I had missed. I know well enough that all these things are phasic and that yes I might have been in a good spell, but I also knew that it would return. So why on earth I have been actually going along with either the mumbling excuse or trying to tell myself that I just wasn’t hearing things properly, I just don’t know, I guess that we all sometimes just want to believe the best possible reason rather than the one that is staring us in the face. Oddly I can actually pin almost the exact day when it all started to slip, I can pin point it because quite simply I was slipping on the times that it takes for me to complete my morning routine.
I suppose I was kidding myself simply because I was pulling myself through every day without getting so badly lost that I was staring into space without the slightest idea of what I was supposed to be doing and it felt good. I had been working on trying to spot the trigger points, that first few seconds where I was just starting to drift, I really thought that I had come up with a way of keeping going and dealing with both mental distractions and physical ones. Then a couple of days ago, I was so badly behind that I couldn’t help but have to silently start to admit that my system was failing, me being me, meant that I couldn’t accept it and I just had to keep pushing and it would be alright. Yesterday, by the time I had done everything I was an hour behind, today, well it is only 10:20 and I am already half an hour behind and slipping further and further every few minutes, I couldn’t possibly tell you how many times I have already hit dead stop. It is a really odd thing when it first starts, you wouldn’t believe how much time you can spend just sitting not moving and not even aware of what you are thinking about. That actually has to be the worst part of it, it doesn’t matter how hard I try, I can’t find anywhere in my muddled mind what I was thinking, it is as though it just shut itself down. It feels as though you have somehow stepped off the planet and dropped into the void of nothingness, time just vanishes and it is like a dripping tap you can’t turn off, nor can you put the water back, once gone, everything seems to go with it. On the good side, I don’t believe it ever lasts more than a minute at the most, normally just seconds, but it can be hard to be sure, on the occasions where I can work out what I have missed then I know without a doubt it couldn’t have been any more than seconds.
It is odd because it doesn’t feel like a memory laps, you know the ones when you find yourself standing in a room without the slightest idea why you even went in there, no this is very different from that. It’s one of those things that I can’t compare to anything that I can think of, almost as though you have gone to sleep, which I know I’m not. If I were, well firstly I think Adam would have noticed that and secondly, I kind of know it is happening, which is why I thought I could stop it and felt that I was winning. It actually doesn’t really surprise me that I am once again finding myself believing I had something under control, to now find that my PRMS has worked out how to take that control back, it is something that has happened over and over again. I have lost count of the number of times that I have thought that I could beat this thing, nor the number that I have wondered which is worse, to lose your body or your mind, but it’s not as though I have a choice, my PRMS will be making that one for me. I guess that is one of the odd things that living with a condition that is progressive, as time goes on you actually slowly start to accept what is happening and that the choices of what it will do to you are totally out of your control, eventually, you actually become at peace with the whole thing.
Over the past few weeks, Adam and I have talked a lot about my health and how we both see and feel such different things about it. I thought until we started to talk seriously, that he was also at peace with what the future holds, I was so wrong. I don’t know how to help him find the peace I feel towards it, I don’t want to die a long horrid death, yet I am not scared of it and I accept that that is what lies ahead. Everything I have read in the past or seen on TV told me that it would be the other way around, why it is depicted that way I am not sure, other than it was written by someone who wasn’t actually the one who was ill, they were just trying to write what they thought it might be like. The more I have thought about it, I can see exactly why, as I would have thought the same before I found myself living it. I now see that our future will require him to physically support me, whilst I try to mentally support him and no matter what any of us may have read or seen, I am sure there are many many couples in exactly the same position.
Read my blog from 2 years ago today – 12/02/13 – The trigger to pain