It’s all about sleep

There is nothing in this world as wonderful as a new pair of earplugs. I only use a set for a couple of days then change them, but last night their impact on what I could hear, seemed somewhat marked. I know I have said it several times, but I so wish I had bought both them and my eye mask 40 years ago. Just like there are occasions that you step into the shower it is so perfectly balanced in temperature and strength, that you just don’t want to have to leave it. Last night, when I put my earplugs in the closing off the outside world, was sublime. There is a perfection, even a joy, in finding yourself in total silence. Add the total blackness that the mask supplies and the comfort of my bed with the duvet fluffed and settled over and around me, and my isolated cocoon is complete. There is nothing like being allowed to be totally undisturbed by anything other than your own thoughts. Isolated and totally free of interruption. I was so ready to sleep last night that finding everything just falling into place without effort was wonderful. I didn’t lie there awake long. Just long enough to appreciate how good it all felt and to run through the day before drifting off into glorious sleep.

I was woken by the unmistakable demand of an over full bladder. No matter how it complained, I was finding it incredibly hard to find the conscious levels required to actually move. It is a feeling that I know all to well and it’s one that I really don’t like. It’s almost as though someone has drugged me and I am having to fight my way to a position where I could show I was alive. It is a real struggle, one that takes several attempts to actually achieve. Pulling myself to the surface over and over, then failing as I slipped back into a fitful sleep. Even when I do manage to actually move and pull myself up into a sitting position, I can’t even then actually move with ease. I sat there this morning feeling terrible and wishing that I could just lie down again. The world was moving, I could feel it although my eyes were shut, I also knew it wasn’t moving at all. It’s a feeling of dizziness but it is totally in my head. So much so that my actual brain feels as though it has been turned into mush that is swimming around within my skull. Often I wake to find that the machine that pulped it is still active and thumping in time with my pulse, whilst a strange sort of low whistle sounds in the background. In normal dizziness your eyes confirm what you feel, this has no affect on my vision at all. I was sat there feeling completely wrong and struggling with a simple question that had to be answered before I went anywhere. Pyjamas or just dressing gown? It was just 14 minutes until the alarm was due to sound, but I just wasn’t sure if I should just get up and stay up, or come back to bed for those last few minutes. I decided that getting up was the logical answer and once dressed I headed for the loo.

I have woken many times recently feeling like this, so I knew before I stood that walking was going to be interesting and that I was going to have to walk with care. My balance always starts to swim with my brain, one second throwing me backwards, the next to my side. Staggering along with what I can only describe as a penguin shuffle, is now a well-known start to my day. From doorpost to the wall and onwards until I find the safety of somewhere to sit again, this morning that was the much-needed relief of the toilet. It was a good thing that I wasn’t in a hurry to do anything else, as I swear that every drop of yesterday’s 2 liters of fluid was all there waiting to leave. From one seat to another in the next door kitchen was my next goal, along with the first cigarette of the day. something that didn’t go well. Just a few puffs and I had to put it out, I just couldn’t take it as it was making me feel even worse. I sat in the kitchen as I have found myself doing more and more when waking at night, not just in the morning. I was just sat there doing nothing, unable to do anything might be a better way of putting it. It’s like I don’t actually know how to move, I sit, blank and cut off from everything, almost as though I am about to go back to sleep exactly where I am. There is a numbness surrounding me and it closes in around my brain more than anywhere else. My mornings are becoming a battlefield, this is happening all to often for my liking. It takes time, a lot of time for me to actually start to feel normal. Today, it was just over an hour before the worst of it was gone, but I still don’t feel great.

Jake just called me and when we were talking, I suddenly stopped. It was more than my normal forgetting words or what I was talking about. It was like those blanks that I get when sitting in the kitchen. It was so dramatic a silence that it was Jakes’ voice demanding was I OK that snapped me out of it. I said, “yes I’m fine”, then shut up again as I desperately tried to work out what had just happened. I still don’t know. My brain just stopped. I was suddenly nowhere and nothing, without a clue of how to get back. Even when Jake tried to help me get back on track, I struggled to find anything that matched the words he said back to me. I doubt the whole thing even lasted a minute, but it felt like it went on forever. That is the first time that has ever happened to me. I don’t like it. It somehow felt like a terrifying place to be and I don’t want to go back there. I often got lost in my words or forget what I was talking about, but this felt so different, it was deeper and stronger than anything I have ever known before. It has even managed to leave something behind it, other than that fear that it triggered. It has left me feeling lost. Not just about what happened, it’s a feeling of being lost about everything.

I said yesterday there are so many small things happening just now. I can’t pick one out which as being the most important or the reason behind it. There is nothing I can blame for it either, but what I do know is something is changing and something is growing in what it is doing to me. My right arm this morning was once again not quite right. It wasn’t as bad as Sunday, but it was numb and I couldn’t make a closed fist again. Now, it’s back to normal. The only common string seems to be sleep, all these new things seem to be worse when I wake, which is totally the opposite of how my life normally is. It feels as though I have two different things happening to me right now. My PRMS and this other thing, which I know is managing to make my PRMS worse at the same time. Whatever happened when I was talking to Jake, I don’t know, but I really don’t feel right, even writing is hard. I just hope it makes as much sense to you, as it does to me as I am writing it.

Please read my blog from 2 years ago – 21/07/2013 – First a funeral, then the will

Well the plans are started and we have talked through a range of things that we agree has to be done so that we can both move on and we can both make the most of the time we have with each other. Strangely it wasn’t……

It all adds up

Yesterday was my pancake-making marathon, I have definitely decided for now that the best, simplest and most flexible way of eating Psyllium is pancakes. There are so many different things you can add to them so they just don’t get boring. I would recommend though that you use yeast to raise them, as it makes a much lighter mix as Psyllium does make everything heavy. I am at last starting to get some results as well. I have actually in the last few days started to go to the loo without straining for hours or pain that makes me feel as though I am going to pass out. It’s a slow process but it’s happening and that to me is a wonderful result after the past six months of hell. I think I have worked out why it works as well. Clearly not all the nerves in my intestine are dead, more weakened and unable to manage the daily transition most are. 10 – 14 days I know is slow and a very long time, but the sliminess that the Psyllium produces, means that even my weak nerves can manage to get it out of me eventually. Now knowing that that isn’t actually doing me any harm, I can live with that. It has been really hard to know what was working and what wasn’t. Firstly because of my week of not eating due to my COPD exacerbation, then I had a stomach bug a couple of weeks later and I was once more empty and back at the beginning of having to fill myself before I knew if it was going to work or not. Day 11 of food arrived and result. I’m not expecting to go daily as I don’t eat enough for that, but as long as I go every few days, then I won’t be complaining. As I said yesterday, the daily pain is just something that I will have to live with, but that’s a different issue.

I am finding this switching everything over to my new site hard going. My brain really doesn’t want to take in all the information that setting something up like this takes. I had been over and over the same problems so many times and forgotten so many times where things are, that my head almost hurts with all the coming and going. I know that without a doubt this site is well set out and easy to navigate, if you have a brain that remembers. For someone like me it is a total nightmare. I know that there will be a point when I do remember and I don’t have to relearn what I worked out and thought I had under control an hour ago, that point can’t come quick enough. I know that there won’t be a single person from my old site who isn’t pissed off by having to move, but I bet there are only a handful of us having issues like I am having. I know this is an extreme situation and no business plans to go under, but when you live with brain damage that sees change as a personal attack, being forced to deal with the new and complex is a step beyond a nightmare, whatever that is. Because I am who I am, I didn’t do the sensible thing. I didn’t spend several weeks setting things up and reading everything about the site before starting the actual work of shifting and working in a new environment. That would have been sensible. My brain doesn’t do sensible, it just does panic. It only knows how to react these days, not plan it. I got the message the site was closing in December, and I had to do it there and then. On the good side, the panic has gone, I’m just living with confusion and the ever resident frustration.

I am still at a loss as to what happened to my right arm yesterday. It was lunch time before the numbness wore off totally and I could actually feel it when I stuck a fingernail into it. It was weird all morning picking up my glass and to feel it in half of my hand, but not on my index and thumb. I had to keep checking that my thumb was doing the job as it felt as though the glass could fall any second. Not being able to trust my body is something I am reasonably used to. It can be scary at times, as I find myself constantly jumping in expectation of my falling, or tripping, or dropping something. Most of the time it is perfectly OK, but the longer you live with a body that doesn’t act in the way it should, the more that mistrust grows. I have been extra jumpy in the last few weeks as since my exacerbation I seem to be finding myself not quite so well balanced. Sideways steps keep appearing in all my forward motions and nerves are jumping and throwing me off constantly. If you go to put your foot on the floor and suddenly you foot jumps tilting itself upwards towards you knee, it’s more than off-putting. Especially when your foot hits the floor at the wrong angle. I have also noticed a marked weakness in my legs. To date, I have been able to stand on one spot for about a minute without having to check my stance or sit down. That seems to have changed as well. My legs just don’t feel able to hold me that way, I have to move about more from foot to foot and at times my knees seem to buckle with more ease. There is also a greater loss of balance at play as well, which just adds to my need to move from foot to foot. I for some reason I have my eyes shut, like when I am washing my hair, even though I do that seated, I can feel myself slowly tilting. It’s not just in my legs, my arms are misbehaving all the time as well. I have lost count of the times I have been unable to pick something up or I have hit things instead as my hand has jumped. I am sure now that the exacerbation triggered some sort of flare or acceleration, I suppose it would have been surprising if it hadn’t. It’s the reason that both Adam and I fear me catching any bugs and so on, as my PRMS will react in some way to it, even a simple cold has a knock on of some sort.

I have also been very aware that my eyesight is worse following the exacerbation as well. Everything has an extra layer of unrequired fuzz. I know my right eye problems have nothing to do with my PRMS, but as it’s my left eye that seems weaker, the culprit is easy to find. It is still my greatest fear that it is my eyesight will be the first thing to give in completely. I don’t have any reason to believe this, just the normal human fear that the one thing that would stop me dead in living my still partially independent life might be the first to succumb. I suppose we all have our personal fear of what might be the first thing to go, but I bet that eyesight will be high if not the top, on everyone’s list. Piecing together all these small things and others I have mentioned in the past month, along with their timings, well I think anyone will see the same pattern that I do, my right arm was just the missing label required for identification. With luck, it will all just settle down, without it, well we will see. My ever present friend the waiting game has another string to observe over the next few weeks.

Please read my blog from 2 years ago – 20/07/2013 – When weakness take over

There is nothing like fighting with a bottle of coke where the factory has added the cap so tightly fixed that you just can’t open them. If you don’t at this second in time have a set of old fashioned nut cracker, I suggest that you buy some right now. Of all the silly little things I bought years ago it is the one I have used the most. Fabulous for opening Champagne, well in my case Carver with ease, if you take your time, as they do slip on the plastic tops they are equally good on…..