What I feared a while ago has actually happened. This blog site is closing down later in the year, so I am going to have to move to another site. At first I thought that it was going to be a total nightmare. How on earth was I going to move three and a half years of daily posts? I knew I could download them in various ways, but it was the uploading that I thought was going to be a problem. I had this horrid image in my mind of sitting here copy pasting each one individual into a new site. The good new is that this site has set up a system to move everything with reasonable ease over to WordPress, which is where I am going, not today, but soon. My new site is there now, but I have some work to do to set it up just as I want it before shifting full time. So this is just a warning and I will be sending an email to each person who has subscribed to this blog to invite them over to my new one. Fingers crossed, WordPress won’t become defunct anytime soon.
As you can imagine it is things like this that when I first see them, shoves me into a complete panic. Anything that is going to throw me out of routine, even my new more flexible one, is an instant panic state. My brain just doesn’t seem to be able to react to change as I used to. Change now equals fear. It’s one of those things that even when I write it, it sounds so stupid. All we are talking about is a few hours work, hours that I now have since I changed everything. Yet it felt on first reading the message explaining what was happening, as though the world was crashing down on top of me and I was slowly drowning in the dust and rubble. Inside I was spinning round in circles, jumping from one possibility to another and terrified that I won’t be able to grasp the techie side of it any longer. IT was something I was superb with, it was a big part of my job. Running circles around the actual IT department and leaving them scratching their heads and wondering how I had done something, was a pet hobby of mine. Now, because I haven’t been working for so long and I know that things have changed and changed again in that time, it terrifies me. These days I use what I know and I stick to it. When your brain has so many parts missing, including enough memory power to remember how you did something so that you can undo it if you’re not happy, is almost impossible.
If I am honest, the real problem is that I know all the issues I have and it is the actual fear of them, that makes my life even harder. I find myself doing things with this growing panic in the back of my mind at every step. Even when I take things slowly, I forget as I go. Yesterday I uploaded the first file with no issue, other than I totally forgot how to do the second one and then having to figure it out all over again. My life is now a constant learning process, with the final part of learning totally missing, remembering. It’s exhausting in itself. I am fine with what I use daily, but the new or something I haven’t used for a long time is a frustrating long and painful process, until I can convince my brain to hold on to it. I quite simply now dread finding myself where I was yesterday morning. I know I made the right decision though when I decided that I was going to get started on the new site straight away. If I hadn’t, well without a doubt, I would have been sitting here this morning a 100 times worse than I was at this time yesterday. That is one thing I have truly learned about life with this new brain of mine, never let it fret. It will always make everything even harder than it is in reality if I just get on and do it.
Even when I read about what my PRMS could do to me when I was first diagnosed, I didn’t once think that I would actually find myself in the position that I believed belonged to conditions like Dementia and Alzheimer’s. Yes, I did know that it could cause problems with memory, but once again it was the degree of damage that I underestimated. For some reason, I thought it meant I would be losing my keys more or forgetting more why I had gone into a room. All of which I do, but to be totally confused by something I actually did just a few minutes before, that didn’t occur to me. Yet here I am, about as much use as your average 8-year-old these days. I bet if I had an average 8-year-old my new site would now be up and running, but I don’t even know one to borrow. It makes me laugh when our government says they want more long term sick people to go back to work. Admittedly, I am sure some might actually manage with the right employers, But any employer I have ever worked for would have sacked me by 5 pm yesterday, for wasting company time.
I may appear to be totally in control of what I am doing and how I actually manage in my daily life. But think closely about what I do every day. It’s identical to the day before yet I get it wrong all the time. Just read this week’s posts, I can’t even get my drugs right without someone to help me. Unless someone asks me or pushes me to remember, most of the time I muddle along quite happily. But when the chips are down, all that is there is a hollow void where memory can only be accessed by luck. I once thought that the joy of losing your memory was that you wouldn’t know that it was happening. Well, it’s logical, how can you know that something is missing when you can’t remember. Unfortunately, it isn’t like that at all. I can see the gaps, I know there are supposed to be things in them and it is that that makes the damage to my brain so hard to live with. Imagine spending half your life looking for what has the camouflage expertise of the SAS. Everything is still there, it’s a matter of access and you don’t have all the correct passwords at hand. If you like, it’s the internet from hell with the laughter of the webmaster echoing throughout it.
Brain damage isn’t a laughing matter, I know that. But trust me, if I don’t laugh at it, it will eventually drive me totally mad if it hasn’t done it already.
Read my blog from 2 years ago today – 17/07/13 – It’s time to plan
When Teressa and John went back down south we stopped talking about all the issues that had taken over our lives completely. I think we needed to as there is only so much time you can talk about death and illness and we had taken it to out limits. But we do need to start talking again and this time to build plans and to start taking actions. Having a timescale to work to is a huge difference, as I really do have time to make all the plans I could possibly ever need. I am like so many people out there who…….