Life in a desert

I’m still having problems with my voice, it can be fine one minute, then the next, squeaking and crackling. To be honest, it is getting really annoying. I never know when I open my mouth, just what might come out. It was bad enough when it was just my brain, but when you have the right words, formed and ready to go, then my brain that normally steals them, is actually working fine, then my voice won’t work. Even when you know it might happen, and there’s nothing you can do about it, when it does happen, you automatically want to clear your throat. One small cough, or just forcing air through my vocal chords, is long enough for my brain to take every word I had planned, away from me. I know, it sounds comical, and yes, I can see the amusing side to it myself, but it does nothing, for my daily frustration levels. I am becoming more and more convinced that it is at least partially, down to my PRMS. I don’t have a sore throat or even a painful ear. I haven’t had a cold, or any of the things that could cause you to lose your voice. The fact that it happens, here, there and everywhere, rather than with any consistency and can, actually, not happen at all for a couple of days, well I’m sure you can see why I am making the connection. With my throat and mouth doing a score of odd things, from biting my tongue continuously, suddenly being unable to swallow, and muscles throughout that area, just refusing to work at all, what other connection could I make?

If you were to ask me what emotion, that my PRMS and its friends causes the most and is the most annoying, it has to be frustration. It is such a stupid emotion to actually have. I don’t fully understand, unlike all other emotions I can think of, what its purpose is. If something is going to stop from even trying, it is frustration, far sooner, than even pain will. It is a totally counterintuitive feeling for nature to have actually invented. If we are supposed to strive to survive and to learn, frustration, is the one thing, that will actually stop us from doing both, especially, as it creates stress. Once your body is at the point where it’s ability to do everyday things, is failing, frustration is bound to appear. There is only so long that you can chase a piece of food around your plate before you just give up eating. So, OK, that’s an extreme example, but it get’s the point across perfectly. The last thing we need, if we are going to survive and survive by ourselves, is to have our own emotions forcing us to throw in the towel, every few minutes. Yet, that is exactly what frustration forces us to do. It might be something as simple to most as doing up a button, but when your hands just can’t bring that button and its hole together, you eventually, stop wearing clothes with buttons. It’s a tiny skill, but it’s one ticked off the list of skills we once had, and will never have again. But it also raises a question, if we just gave it a rest for a while and tried a few days, weeks or even months later, might we find we haven’t lost the skill at all?

I ask that question for a reason. I have only one item of clothes with a button on it. It happens to be one that I wear when I leave the house and twice on Monday, I did that button up without even thinking about it. So clearly, we never will forget something as simple as a button, but does this mean, that I now believe that I can do up a cardigan, no it doesn’t. But it does mean, that I might manage a couple of them before the tremors appear, and I would be forced to ask for help. Frustration, alone, has stopped me from doing so many things and now stops me from even trying. Maybe, a better approach to all those annoying tasks is to always try at least once, and at least take the time to see if today, we can do them, rather than assume that we can’t. After all, I can’t see the day coming anytime soon, where frustration alone is actually really going to stop me from talking forever. I am at the very least always going to try, every single time that I want to say something. But I still don’t understand the point of frustration, as, without it, we would just keep right on trying until we succeeded, or died.

I woke last night just before midnight. Nothing unusual in that, as I was awake with just one purpose in mind, to go to the loo. I was just coming out of the bathroom and turning the corner into the kitchen when Adam appeared. He wanted to know if I needed something to drink, I did, but nearly said that it didn’t matter when he shot past me into the kitchen, to set up a glass of coke for me. All I really wanted was a couple of mouthfuls. I always need something to drink when I wake as I suffer badly from a dry mouth thanks to my meds. After 14 years of it, I am more than used to it. During the day, I have to have a glass of something beside me so that I can sip fluid continually. At night, well I sleep, but when I wake, I can’t find the tiniest spot of saliva. There is one thing though that strangely demands a moist mouth and that is smoking. I have managed the odd one with a dry mouth, but there is always a feeling that something is missing and somehow, the kick gets lost. So there I was sat in a dark kitchen, enjoying my cig and sipping my coke. As long as I was active all was well, but the second I sat still and shut my eyes, my body started to go back to sleep. I have only felt it that strongly on a couple of occasions before. It felt like my body was drugged, that somehow, I had travelled all the way through there but my body hadn’t woken at all. Every cell tingled, just like it does just before you go under and general anaesthetic. If I opened my eyes, it stopped, closed them and there it was again, just as strong and just as convincing. I even put it to a test by sitting and letting it happen right up to the point where I felt I was in danger of sleeping in my chair. I had to force my arms to move to stop it in it tracks, but I know without a doubt that I would have been asleep if I had waited for a second longer. Returning to bed was the final proof. I remembered getting into bed, I don’t remember a second past the point where I was lain down and comfortable, I was gone.

I have tried so many times to not drink in the evening so that I don’t need to get up at night, but it doesn’t work. When you have a mouth as dry as mine, there really is nothing other than stuffing yourself with sweets, that keeps it moist better than a constant stream of fluid. I have tried those gels that the doctor can prescribe, but they don’t work anything like as well as they claim. If my memory serves me correctly, they are supposed to last hours, between needing to spread it around your mouth with your finger. I find it last about 15 minutes if I was lucky. I would rather take a sip of fluid than sit with my finger permanently inside my mouth. I also think I remember that they don’t taste too great, no surprise there then. If I hadn’t suffered with it for soo long, I think I might be adding in the dry mouth as one of the things that go towards my losing my voice. The very top of my throat, exactly where the two tubes split, often feels just as dry as the rest of it. Adam doesn’t appear every time I get up in the middle of the night, but when he does, well I always find it really hard to talk. My voice just isn’t there, and he nearly always asks if I have a blocked nose. His questioning of that has been happening for months now. Last night, set me wondering, how long has my voice really been affected? I reckon, it’s been showing signs for about six months now. Middle of the night, over the phone and first thing in the morning, that question has been there, always based on how my voice sounds. Every time it has been asked, my answer has been exactly the same, “I’m fine” and I always have been. If I needed another reason for thinking it is my PRMS, well there it is. No virus, bug or anything else, sticks around that long.

Please read my blog from 2 years ago today – 21/010/2013 – Picking through history

When you try to keep track of what is happening in the world you often find that what you are hearing is just what you heard years ago, the world doesn’t really change, we think it does, but it doesn’t. Somewhere in the world…..

Who needs sleep

I stayed up for my latest night in over a year, well it was the final of “Strictly”, after 15 weeks of watching every week, I wasn’t going to miss it. I may watch 100’s of hours more TV than the majority of people, but I still think it is the best program around and I wanted to see what should have happened many times before, Pasha winning. I know that Adam thinks I have a soft spot for Pasha and I do, but not for the reasons he thinks, that I am sure off. I quite simply not only think he is a great dancer, but I admire him for the fact he found a way out of life in Russia and has made a great life for himself through his personal passion. Some people in life deserve admiration for more than just one thing.

10pm found me heading for bed with a problem, my body thought I was trying to kill it and my mind was whirling with happiness, what they say about not reading a good book runs true for good TV as well, you mind is so busy it just doesn’t know how to switch off. I had taken a booster pill at around 9:30, I had been waiting for Adam to come out of the shower as I was bursting to go to the loo. It was my fault I should have gone as soon as he said he was going to have his shower, but I didn’t want to leave the TV, I still haven’t totally managed to get used to the fact you can pause live TV. When I did get in there, I couldn’t at first get my bladder to comply, that happens a lot, there is something odd about the messages once it has accepted the “hold on not yet” one, it quite simply refuses to obey and defiantly refuses to listen, even when I plea. As it eventually started to run, I was hit in my guts by the same pain as I had a few weeks ago, the pain was blinding and straight away I was shaking and sweating. It was identical, straight across the top of my abdomen and down slightly off centre to my left side, once, twice and then a third time. I thought it was over and did my best to control my breathing and relax enough to let the pain pass from me, but as I eventually managed to empty my bladder completely, it hit me again, I was left feeling as though someone had been kicking me in my guts, a pain I know from a long time ago now, but the difference is only slight. Pain or not the TV was calling and as is always the case when your stomach is hurting like hell, walking become something your legs don’t want to do, but I straightened myself as much as I could and walked steadily back to the settee, I didn’t want Adam to worry or fuss.

I don’t know if it is just me, but when things are bad, I do everything I can to cover it. It doesn’t matter what it is, or were it is, I always want to wait and see what happens and to be honest, there really isn’t anything that anyone can do, pain isn’t taken away just because someone is holding you, fetching you things or any of the array of helpful actions, that actually don’t help. On top of that though there is something to me far more important, I don’t want anyone to ever think that I can’t cope when I can, I want that day when I scream for help, for it to be clear to anyone who is around, that I really do need it, I’m not just making a fuss. By the time I made it to bed it was just the shadow pain that remained and now that I was lying down, I also had the opportunity to prod around and see if I could feel anything, well I found the site of the pain with no trouble, it was still surprisingly tender and totally solid as it has been for ages. I had hoped that it might have been the prelude to my bowls actually working by themselves, but no such luck. All that I am aware of now is the racket of every mouthful of liquid I take, it clashes around until it reaches that top line of my abdomen then silence and a dull ache where what ever happened, happened.

I discovered the noisy stomach in the middle of the night, I woke desperate for the loo once again and once again, I had to fight for it to actually happen, but this time there was no added pain. While I was up I went to the kitchen for a smoke and a glass of coke as my mouth was as dry as a sandpit, the array of tablets I take seem to have the power of an enormous sponge. It is actually truly rare to find that I have any real saliva, I have tried the gels that the doctor can prescribe for me, but I honestly found them of little use, far better to just continually take tiny sips of anything wet. At night it gets so much worse, logical really, I wake most days with my tongue feeling like a piece of wood and lips stuck to my dried out gums. I am quite good normally at getting up and dealing with what ever it is that time, without really waking, it is almost a game of sleepwalking, but I was awake because of the fact I had had to apply thought to emptying bladder, something that doesn’t work when half asleep. Within a short time of lying down, the noise started, in fact it was a real racket, not only could I hear it gurgling and thumping it’s way around, I could feel it. Sleep wasn’t going to happen for a while longer that was clear. When I had returned to the bedroom I was aware that the room was freezing, so I left the bedroom door open so that the heat from the hall storage heater would filter through, unfortunately, all it did was to worry Adam. When he too woke a little later, I could hear him wondering around the hall and other rooms, stopping occasionally at the door as though he was listening, I knew he was looking for me. I don’t know where he thought I had gone as I swear I heard him even open the inner door and look at the front door, by that point I was wide awake and I went for a cigarette. I normally do keep the door shut because noise wakes me with ease, but the cold has gotten the better of me a few time recently. I think I have only once managed to go from that point to morning without getting up to shut it, just as I had to last night, within 10 minutes of Adam settling again, he was snoring and the bedroom door was firmly closed.

Two nights in a row, disturbed by stupid things, things that I had no control over, or could have changed in any way. I am so far out of normality that routine feels like a distant stranger and I have already given up trying to work out what my body is making of all of it, there is no point in me even trying. In the past 12 hours I have taken three booster tablets, they are holding the worst of the pain at bay, but not the discomfort or aches and once more I feel like I am sitting in a pit not even wanting to try to climb out and oddly, I’m quite content down here for the minute. Here’s to tomorrow.


Please read my blog from 2 years ago today – 21/12/12 – Fixing the gaps

Last night I actually remembered to ask Adam to sort me out a couple of cards to send to my Mother and brother, he had already done it. He realised that I have forgot all about it so when he was sorting out his cards for his family he added them onto his list. Clearly he has noticed that my brain just isn’t here or up to dealing with very much at the minute and……….