I’ve done it again, forgotten what day of the week it is. Not surprising really as I do so most days. Why am I suddenly living in a world where almost everything doesn’t make any sense or is that just something that I can’t forget, the feeling that nothing ever makes sense anymore. See what I mean, even what I am writing, doesn’t make any sense anymore. Right now, I would give almost anything, to be able to get through one week where life doesn’t feel like something that is happening to me, something that I don’t have control of anymore. I was about to go and have a sleep when I suddenly remembered, that today is Wednesday, and any minute now my doorbell is going to ring, it’s will be my carer here to give me my shower. I asked them to be here twice a week to shower me, I even chose the days I wanted them to be here, but right at this second, I don’t want a shower and I don’t want anyone in my house, I want to go to sleep. I’m a fifty-five-year-old woman and it doesn’t make sense that I can’t choose if and when I want to have a shower. Yes, I know all the reasons why things are as they are, but that’s not the same thing as making sense.
On Monday night, I woke up just after midnight, again sitting on the edge of my bed with no idea how I got there, and unable to wake up. I did exactly the same thing every two hours until the alarm sounded. Ignore the sitting on the edge of the bed bit, odd as it is, but why the hell, did I wake up every two hours? One more example of the way that life is happening to me. No one on this planet would choose to wake up every two hours. It doesn’t matter if it is other people doing things to me, be it enema’s every second day, my showers, meals, and even sleep, is now out of my control, but I still feel like the person I was twenty years ago. The person who controlled not just me, but almost everyone around me, (That sounds bad, just to correct it, I was a manager, so it was my job to control others) but I am still that person, at least my brain says I am, even though it can’t remember what day it is, I am still that person. Yet I know without a doubt, I couldn’t organise a piss-up in a brewery, even if I put every last brain cell I have left into the task, I’d get it wrong at some point or other, where is the sense in any of that.
I can’t even remember when it happened. What day was is when I woke up and life was happening around and to me, I just knew that was the way it was. Maybe it’s just another part of being ill, another one of those things that no one tells you will happen, but it does. You wake up and there’s life. Yours, but not yours. Other people are telling you it’s time to do this or that. Here’s your lunch, not at the time you really wanted it, but at the time other want you to have it. Just like your shower. You can see that cubical, it’s calling to you, but you know you can’t step inside it until, there is someone there to wash you because that’s another part of your life, that belongs to someone else’s timetable. Suddenly without even noticing, your life consists of other people doing, while you comply because otherwise, nothing at all would happen. Yes, maybe, this is another part of chronic illness that no one tells you about. So what next is going to happen, what is going to be the next thing that doesn’t make sense, inside my brain, but there is no other choice left for.
I guess this is the way life is when something is eating not just your body but your brain. They are never going to agree with each other again. I’m not moaning, I’m just saying, that once upon a time, I had a life, I didn’t just live a life. Yes, I’m happy in my own way, but I have a growing fear, of what my future holds, of what will go next. Will someone be spooning my food for me, or putting me into my bed, or changing my nappy? How long before I don’t just forget what day it is, but I can’t remember what a day is? I know I don’t talk about fear or being scared, but we all are, at some time. Those who say they aren’t, are liars. We’re not scared all the time, we couldn’t live if we were. So we pack it away and keep it locked down, but every now and then it appears and when it does, we pretend it’s not there and distract ourselves until it goes quiet again, but we all know it’s there. It’s part of being ill, it’s part of living a life we didn’t choose and sure as hell didn’t want. Every time our health take a jolt, it rears its head and it pushes its way into our head, making dealing with everything else, just that bit harder, and just like everything else, it doesn’t make sense. One more thing that is happening to me, when I really don’t want it too.
Please read my blog from 2 years ago today – 06/10/2014 – Grief goes on forever
I woke yesterday after my nap with a sudden realisation that it was cold. I had noticed nothing earlier in the day, but as I put my pyjamas back on I couldn’t help but notice the material was cold, colder than I have felt it for months. I was pleased when just 20 minutes later Adam went and added a layer……