I got up yesterday morning to be more than a little confused by what was in the fridge. Right there beside the milk was a bottle of mouthwash. I know I do some rather stupid things at times, but somehow, I always hold a memory of it, once I’ve discovered it. Yet I was staring at the mouthwash and there was no memory, not even of one of having used mouthwash overnight, the only explanation, was Adam. It didn’t make any sense, but I decided to leave it just where it was until he woke up later. The temptation to wake him was huge, as I had this huge question, “Why? spinning around in my head. As luck would have it, by the time he actually woke, I had forgotten all about it. It took only minutes though for his head to appear around the door, looking at me quizzically and asking “Why is there mouthwash in the fridge?” We then spent the next half hour, throwing our defence into the ring and each other having our say about it. Then silence fell for about ten minutes before Adam said “Well logically, the most likely person to have put it there is me. After all, the seal on those bottles is really fiddly, and you’ed have never managed it. And the seal is off and in the bin, I’m sure you wouldn’t have managed it. but I still don’t remember doing it?” I tell this story for two reasons, firstly, the next time he accuses me of doing something stupid, I will hopefully remember this, and remind him of it. Secondly, to prove that it isn’t just those of us with brain damaging conditions, who put odd things in odd places.
My personal track record is actually quite spectacular, it’s just Adam rarely finds them first. When I do silly things like putting clean dishes into the dishwasher, or the dirty ones back in the cupboard, which are my favourites. With Adam being at work and my using a range of dishes he rarely even touches, well, of course, it’s going to be me who discovers my mistake. What I don’t understand is why the second that I see them, I actually do remember doing it. How can you do something like that and blindly go on as though nothing is wrong, yet remember every second of it? I have come to the conclusion that it has nothing to do with memory, but it has everything to do with not making connections at the moment I do these things. Somehow, my brain doesn’t pick up on the fact I am doing something illogical, so I continue and complete the action oblivious to the fact it’s wrong. Somewhere in my head, I have made the error in starting the action and it’s as though my brain doesn’t want to admit it’s got it wrong, so it tries to cover it up, by lying to me, by telling me “This is what you should be doing, don’t think any further.” Unlike what Adam did, as we are now both convinced that he fetched the bottle of mouthwash from the bathroom cupboard, opened it and put it in the fridge, all in his sleep, despite the fact, that he’s never sleepwalked in the past, that we are aware of. Our brains are capable of the most amazing things, is it really that surprising that they can play these sort of trick on us?
The damage that a condition like MS can do our brains is never ending. It appears, to be totally down to the luck of the draw, how severe that damage actually is. I never saw my initial MRI that was requested by the ear, nose and throat department. Despite all the test doctors had done on my over the years, not one ever did either a CAT scan or MRI. When I was diagnosed with Fibromyalgia, the doctor specifically said, that there was no point doing such tests, as there was nothing to point to anything more severe. She did, though, send me to ENT for them to work out what was wrong with my balance. The Doctor I saw there, quickly dismissed the idea that I had Meniere’s and he sent me for that fateful MRI. I remember him clearly saying to me when he had the results, that I had either had a phenomenal number of Stokes for someone my age, or, I had MS. Well, we know the correct answer, but I still wish I had asked to see it, and what my phenomenal number of lesions actually looked like. Whatever they look like, I am more than aware of what they are doing to me.
I have a report that was written by my Neurologist in 2006 which I requested with reference to my abilities when it came to working. In it, he refers to my neuropsychological reviews, which showed “that memory is now significantly impaired in relation to general intellect and there is also evidence of frontal dysfunction.” He added later “I can not comment on the quality of her work, but clearly given her cognitive problems, her work is likely to be slower than previously and it is likely that she is more prone to becoming frustrated.” Although this was written in 2006 he was referring to the last tests done in 2003. It goes without saying, that without a doubt if they were to perform those tests now, my situation, will have deteriorated. Progression is something I just have to live with, but I have to say, that it is also part of the reason that I no longer see my Neurologist, I was fed up of tests that kept saying things were worse and no one being able to change a single tiny part of it. My lesions are eating my brain and slowly eating me.
When your brain starts falling apart like this, well he’s right it is frustrating, in many ways, it puts me in line with many patients who have Alzheimer’s. Just like them, my brain is destroying my life. Even if I could get out of my flat, I wouldn’t be able to work, in 2006, they recommended that I reduced my hours to part-time, but I didn’t. I wish that it was as simple as doing a little sleepwalking, or even having done something wrong or stupid, and simply forgotten. Brains are funny things and none of us appreciate just what they do until they stop doing it.
Please read my blog from 2 years ago today – 22/03/2014 – It should be easy
There is one thing on my mind today and that is comfort, it doesn’t seem to exist and it is also one of the hardest things to not think about or block. We all know what is like to just not be able to find a comfortable position, to keep moving, changing angle and pressure points over and over again, but without the slightest change that lasts for more than a few seconds. Those evenings spent in the cinema trying to enjoy a film you have been waiting to see, but the comfort monster has you in its grip and as hard as you try to stay still, to not spoil the film for those around you, you can’t. You spend the whole film squirming around, moving back and forward and side to side, but nothing works, nowhere in that seat you have to sit on is there a single spot that just works for all of you. It is something so basic and so everyday that most of us don’t……