Adam is on holiday this week, I know that because right now, there is snoring coming from our settee. Well, either he is on holiday, or horribly late for work. Fortunately, I do remember him telling me that he would be here this week. He used to tell me the days he had booked as soon as they were approved, maybe he still does, I can’t be sure as I don’t ever seem to remember these things any longer. I do remember him reminding me a couple of time on Friday and again yesterday. He has learned to do that, as otherwise when I wake on his first day off, I go into a panic and try to shove him out the door. Dates and when things are supposed to be happening were probably one of the first things that went when my memory started to fail me. That was years ago now. I don’t think I have remembered a single birthday, anniversary or anything else for the past 25 years. I used to be so good at it, I was one of those people who didn’t only remember important dates, I equally remembered stupid ones, like the day I met so and so, or when I last went to the hospital and who I saw there. Names where the second thing to go, most people thought it was the first, but I know it wasn’t.
At first, I blamed baby brain, but when baby was attending their first day at school, that excuse wears thin. No one but I seemed to be concerned about it, I think it was the first time I ever felt totally patronised by a doctor, although it was far from the last. I have never understood why it is that people are inclined to just laugh when you say you forget things or tell you “everyone does” or “I forget things all the time”. What they all ignore is one simple thing, we wouldn’t be concerned about it, if it were normal to us. Just as when I went to the doctor to say that I was tired all the time and I didn’t have any energy, to be told it was “it’s normal for a new mother”, wasn’t helpful. Especially as it wasn’t my first baby. Platitudes should be banned when it comes to the subject of our health. Doctors especially should know that people don’t complain about how their bodies or minds are working, unless, it is not normal to them. If that were normal, well they would be queuing around every corner, to complain they don’t have two sets of arms, as they need them to control their kids, which is just as stupid.
Right now, I have a new and growing problem. It’s one that Adam isn’t either taking seriously or is trying to ignore. When I mention it to him, he brushes it aside, which is just about as helpful as my doctors were 30 years ago. I know I have mentioned this a couple of times in here over the past year, but it is now happening more and more. I have developed a problem when it come to dealing with time. What I mean by that is, I can’t look at a clock and work out how much time there is to go, until something is due to happen. I first became aware of it because of the TV. I kept screwing up the amount of time there was to fill, until the next program we wanted to watch was due to start. For example, it might be 7 pm, I can see the program is listed for 7:30 pm and I will believe that we have an hour to fill, rather than the half hour anyone else would know instantly, was correct. My mistakes with the TV are clear for Adam to see, but it is a mistake that I am now making all the time. What the clock says, and how my mind deals with it, is now frequently wrong. I now frequently get lost as to where I am in the day, and how much time I have before something is due to happen. That something can be anything, from lunchtime to Adam coming home. Which trust me, in my life, they are major events.
In the last few weeks, I have also been having more and more trouble working out what day it is. Not when I am looking at a calendar, but in my head. Yes, I know people muddle their day frequently, but I am talking about several times in one day. Literally, I can have a selection of two or three different days, in the space of one. If I am really confused, it can happen in the space of an hour. Each time I feel lost, I check the calendar, which should be enough for anyone, check once, correct it in your head and get on with it, but not me. I know that Adam knows about this, maybe not quite how bad it is, but he knows because even I am aware that he has corrected me several times. Like anyone we have things that happen in our lives because it is such and such a day in the week. Well, I’ve been screwing things up, not because I have forgotten about the event, but because in my head, at that point, I believe it’s a different day.
There is one other thing, it’s as equally part of this issue with time, but I have put down as lack of concentration, but now I am wondering. Take something as simple as writing this blog. Throughout it, I have found myself repeatedly lost in space. It doesn’t just happen when I am sat here, it happens whenever it wants. I simply stop. I’m not really thinking about anything, I just zone out of what I should be doing. Again, I know Adam has noticed it. How? Well, that’s easy, as he asks me repeatedly “Are you alright?”. Then I snap out of it and answer “yes”. Time vanishes, which when I think about it, isn’t really that surprising.
It’s easy to say that as I am housebound and I don’t have a job, so what does it matter. Well, it may not matter to anyone else, but it matters to me. It matters because although it is a minor thing on the surface, things that to many just aren’t important, I am concerned as to what is behind it. What else is being munched in my brain? Time and days are the visible part, an effect that I can see and document, but what else is in the same section of my mind, what else is going to start going next? So why am I not talking to my doctor right now, rather than writing about it? Well, that’s simple. My doctor will simply send me back once again to see my Neuro. He will send me to have more psychological tests, which I will wait six months for, then have to go back again six months later again, so they have a clear picture that lines up with previous tests. Then what? Nothing, just as always, all I will be doing is giving them data, not changing anything for me in any way. No one will be able to tell me what is going to happen, even if they can give a good guess as to what is going on and what will happen, they never commit to anything, because PRMS is unpredictable. There is no point in talking to the doctor as all that happens is I am put through loads of stress, to be nowhere further on than I am at this second.
Please read my blog from 2 years ago today – 14/03/2014 – Lucky to be housebound now
It took me a long time to come round to the idea that I should join all others and set up a LAN so that I could watch programs on the catchup services, a long time that I now wish I hadn’t wasted and had simply done it. It’s is strange how something so small can actually totally change your daily life and how quickly it has along with a PC or internet connection of some sort, is now part of me personal recommended things you require to stay sane in a housebound world. I have never envied those who were housebound as little as 20 years ago, their trials would have been a million…..