Lost and in need

I did something this morning that I can only ever remember doing once before in my entire life. The alarm sounded and I turned it off, threw back the covers and went straight back to sleep. On the good side, the last time I did it, I went back to sleep and was 4 hours late for work. This time, Adam noticed that I wasn’t moving and woke me again. I haven’t worked for years, and I have nothing other than my routine, to say that I can’t go back to sleep. Yet, the second Adam said my name, there was that huge feeling of overwhelming guilt and panic. I think it is the fastest that I have moved in a long time. Somehow, I made one fluid movement from flat on my back to sitting on the edge of my bed. I think it was pure shock that kept my eyes open through the next five minutes, as I struggled with my clothing, whilst fighting the same exhaustion that has been with me for the last few mornings. I am not exaggerating over the fact that I have had to really fight to stay awake, and just as has been the case every other day, I also had to fight with my wheelchair. Despite having managed once more last night, to rise at around 4 am and travel right through the house, without banging into a single thing. Here I was three and a half hours later, once more, bumping off walls, doors and anything else in my way.

That dragging sleep, makes everything feel impossible. The whole process of keeping my bladder under control until I actually get my wheels through the bathroom door and around the edge of the shower cabinet has been more luck, than skill. Standing up, is a different subject, but the real battle comes seconds later. I have to convince that same bladder that was threatening me the whole way there, to actually do what it should, now that it’s in the correct place. When all you really want is sleep, there is a secondary danger in having to apply relaxation techniques, just to get your bladder to empty. Then, of course, once relaxed and empty, I have to do the opposite. I have discovered that first thing in the morning is never, the time to trust my bladder. With this intense wave of tiredness, I can’t trust it for even a second. Empty or not, it will somehow start dripping, over and over, the second I start to stand-up again. If that wasn’t bad enough, I still have to complete the remained of my blundering journey from bed to PC. There was no denying the relief that I felt this morning when I actually made it to the safety of this chair, one that doesn’t move. No matter how I have searched the parts of my memory, that are permitting me in, I honestly can’t find any stage where sleep has had such a tight hold over me. I have joked before in my life, about still being asleep long after I have gotten out of bed, but this isn’t a joke. I don’t think, I have been really awake, any day recently, much before an hour, or more, after the alarm.

On Friday evening not long after Adam came home from work, I had to leave the living room for something. Much to my annoyance, I managed to just touch the side tables by the door. I did so hard enough, that the crystal lamp made a slight rattle. I was so angry that I actually shouted out loud at myself. I had noted over the entirety of the week just over, that once I am awake, and as long as Adam wasn’t there, that I don’t even touch anything, not even lightly, that I wouldn’t have done, when I was still walking. But if he was in the house, anywhere in the house, it was almost a guarantee that I would make something rattle, or clump as my chair drags past it. I had come to the conclusion that it wasn’t a lack of skill, it was the fact that I became self-conscious. I started to overthink my actions, rather than just make them. From the instance, I shouted that out and got that pent-up frustration at myself, out and aired, I haven’t banged into a single thing. Two whole days, without crashing, rattling or smashing into a single thing. Without a doubt, if I hadn’t been willing to make that accurate put down of myself, that wouldn’t have happened. It is something that I have been very aware of all my life, if we are willing, to admit, to even those who hadn’t noticed, our own weaknesses, that they often then fade away. I don’t know why it works, but it does. Not only, am I sure that my home appreciates it, but it lead to a weekend where I felt, so much better, about a lot of totally unconnected things.

It is partially obvious as to why that is, simply because all my muscles have been far more relaxed. Just that one, small thing, led to my whole body feeling totally different whenever I was on the move. Clearly, not arriving at my final destination, either tense or angered by once more having a string of stupid accident, has meant that overall, I have been relaxed, for nearly the whole weekend. The knock on benefit has been huge. I couldn’t even compare the last two weekends with each other. Part of that was, yes, down to my losing it last Sunday evening, that clearly played its part. But, just not being tensed up physically, has been wonderful. It is amazing how you can be pent up and totally, unaware of it, until, you break it. I had known that I was spending more and more time, just even sitting here, trying to unknot myself. But, I wasn’t putting it all together, something I would have done years ago with ease. I don’t fully understand, why it is that I no longer have that ability to self-monitor and analyse the reasons, from the effects. It is a bit like having a growing mental blindness, where more and more instead of processing things, I either don’t see them at all, or I am having sudden flashes of light. All those normal steps of working out for ourselves what to do next, are missing. Like everything else that is happening to me, I can no longer trust myself to see the truth, or do what is needed. Just like Adam now has to tell me to physically do things, I almost feel as though I now need someone to point out to me, what I am mentally doing or not doing. It’s an odd one, but as I have been working through here in my posts recently, I know there is something missing, I’m just not seeing what, or what to do about it. I just wish that I could lift my skull off and let someone else look inside for what is going wrong, and why. Then tell me how I deal with what my brain is doing now.

I hope that makes sense. As I said, it’s a hard one, but I do know clearly, that things are going wrong in that side of my life, and it is disturbing me. It’s disturbing me, because, for some reason, I can’t find the answer. I’m lost.

Please read my blog from 2 years ago today – 12/10/2013 – Noticing the risk too late

Sometimes things sound so simple, too simple to be honest and that is when I find the danger usually starts. All I needed to do was to get a new pack of tablet out of the cupboard where I keep all my spare meds, from that pack….

5 thoughts on “Lost and in need

    • There is nothing there that hasn’t been part of my life for as long as I can remember. But having been housebound now for 8 years and now wheelchair bound as well, step 6 isn’t possible in any way at all.

      I haven’t felt like this before, it isn’t so much my mood, but something much deeper. It’s the feeling that I everything I have done to make my life here as comfortable, happy and useful, is suddenly failing especially on the final one. I don’t feel I have the same purpose and usefulness to my life and as if my mind isn’t helping me, just locking me in even more. Brain damage is a hard one to handle at times, especially when progressive and you don’t actually know what it’s doing. Thank you for your help.:)

      Liked by 1 person

  1. Wow. Powerful stuff. I know you don’t want sympathy, but I can’t help but feel bad that you have to go through this… it must be a scary thing. I wish you all the best 🙂

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  2. YOU ARE ADJUSTING TO BEING IN A WHEELCHAIR.IT TAKES TIME.YOU ARE SO DISCIPLINED IN EVERYTHING YOU DO, THAT LOSING YOUR LEGS (MAYBE FOREVER).IS SCARING YOU. I DON’T KNOW. I WISH I HAD A DEFINITE ANSWER.YOU ARE HUMAN. GIVE YOURSELF SOME ROOM FOR MISTAKES AND MAYBE SADNESS OR ANGER.

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