I realised yesterday that my memory has more gaps in it than I thought. I was doing some writing and mentioned something from the first few years of our marriage and I realised that I really don’t remember that clearly the first 3 years. My memories of my life when I was 12 or 22 are clearer than just 10 years ago, it isn’t like I have forgotten all of it but there are a lot of details missing and I mean a lot. I always used to prize my memory as I was one of those annoying people who would remember conversations from years ago but I found myself struggling on silly things like when Adam got his car and what year that was. He had a couple but doesn’t have one now as we really can’t afford what is in reality a huge luxury, but that isn’t the point I can’t even remember what year it was or anything around it to help me place it in time. I had noticed that in the last few years I had developed a habit of saying things happened 5 years ago, or 10 yrs ago when it wasn’t anywhere near that date and the bundle of years I allocated had more to do with giving it a date rather than my actually knowing, if you like an attempt to cover up what I don’t remember. I guess that was a way of denying that I didn’t actually know.
A perfect example was a treatment one that I think gave me a second change and you would think that something that with important, I would remember exactly when it was. I had reached a real low in my MS, again I am guessing here but I think it was about 2 to 3 years after diagnosis, the progression was running wild and I was in danger and I mean real danger of loosing my job, I even had a helper supplied by the EU to assist me in the office, not for getting around but to help with part of my job. At that time I had to supply the daily business stats, but I had a problem, for some reason I couldn’t spot errors in them and I mean the kind of error I would expect a 6yr old to spot. This lady arrived at my work everyday at 7am, by that time I had done the bulk of the stats and they needed checking, she would compare the day before to that days and if she found something I would fix it, once all were completed she would then run round the building putting them on all the required desks, so that when the rest of the staff arrived they were there waiting for them. It wasn’t just errors in the morning stats that the problem where confined to, they were just a victim of the situation, I forgot everything, I had a Dictaphone, pads, memory slates all kinds of things to help but between that and my speech slurring and stuttering, work looked as though it would soon end. Test were done and I scored really badly. I was then given a 3yr course of a chemo type drug Mitoxantrone, the drug suppresses the immune system and as it is the immune system that is doing the damage, it helps a huge amount. Without the fast acting new damage, the damage that was there has a chance to repair, I had a treatment once every 3 months and with each treatment more and more of me slowly reappeared. It wasn’t just my cognitive functions that improved but also my mobility improved slightly, by the end of my 3 yrs I felt almost, like myself again when it came to being able to function in a pressurised job and in everyday life. When I try though to remember anything that I think should be in that 5 to 6 year period I had real trouble doing so, as there is very little there.
To me Mitoxantrone was a wonder drug, it gave me back my life and although the damage was reversed it did start up again but at a slower pace, without it by now I would be in need of 24hr a day care, I was disappearing at lightening speed. I now know that I lost a lot of my life from when my MS took over badly, to I am not sure exactly when, but maybe the last year of treatment, MS stole it all. I can’t have the treatment again, it is a one off as it can badly damage your heart, mine now has problems of it’s own, so it is a total no. What I found yesterday though is I am loosing things again beyond the treatment as well. I know I have been housebound now for 5 nearly 6yrs now and that I was working for the first 4 of those years, but I can’t remember anything much of those years. Important things happened in those years I know they did, but the whens, and the whys have all started to become a mixed up pool. I think I would have trouble again with all the test that they do to check your cognitive skills. May be it is a good thing that I am now writing more of it down, as otherwise I may find it too late to get any of it in the right order.