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…..
WOW!!! EVERY POST YOU WRITE MAKES ME FEEL LESS AND LESS ALONE AND INVISIBLE.I CAN’T DRINK ANYTHING BUT WATER(DIGESTIVE SYSTEM SCREWED UP).I KEEP 2 BOTTLES BY MY BED,SINCE IT TAKES 1/2 A BOTTLE TO HYDRATE MY MOUTH AND THROAT.4-5 TIMES A NIGHT. I CAN’T TALK FOR AWHILE EITHER.I KNOW WE ARE DIFFERENT, BUT BESIDES THE MEDS,YOUR FYBRO COULD BE THE CAUSE OF LOSS VOICE. THAT’S WHAT MY GP SAID .DO YOU CHEW GUM? IT KEEPS SALIVA IN YOUR MOUTH.I KNOW YOU PROBABLY DON’T CHEW,BUT I’M GRASPING AT STRAWS.
I do not suffer the motor function problems that you do, but my brain fog can cause a real problem getting dressed in the morning. I figure if I remembered deodorant (even if I put it on twice) and my underwear are right side out, it’s a good day!!
Your blog is always so inspiring! It is so good to know I’m not alone!
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None of us, should ever feel alone, as we never are 🙂
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