Sometimes, you can write something, and you are left deep in thought, without even knowing it. It was like that yesterday when I wrote about the loss of feeling and sensation in my face. It started slowly, but as the day progressed, that snowball was rolling itself into a mass of trails all from one source, I had opened a complex maze. I am sure you know what it is like, one tiny thought opens up a million others.
It started with something that has been happening for years. The fact that at times I have problems coordinating my breathing, talking and swallowing. I landed up in hospital years ago for over two weeks, because I had a severe bout of it. So bad that I couldn’t really talk at all. I was speaking in short spurts, not full sentences, just a few words, stop, breath or swallow, then a few more. It never went away fully, and recently, I have been doing it more than usual. Add that to my recent terrible memory that leaves me stopping before the end of the sentence and just not bothering to complete it, and conversation just isn’t what it once was. But there is a third element to my issues with talking that also started years ago, but has recently picked up. It is like there is some sort of bubble, that feels almost solid sitting over my throat. I can’t swallow the saliva that is in my mouth and I can’t breath until I do. No matter how I try, I am caught in a desperate circle of trying to either breath or swallow but achieving neither. I frequently find myself move my head around, stretching my neck, trying to cough or do something that might break it without success. There is only one thing that works, I have to take a large mouthful of liquid. Once my mouth is full, the instinctive system breaks through and I swallow, clearing it and letting me move on. Occasionally, I have to take a couple of mouthfuls. All of these has one thing in common, it’s like my muscles in my mouth, neck and throat are all fighting each other. Until recently, they have just been one of those odd things that happens occasionally, now they’re happening several times a day.
My second path involved my mouth as well, this one though is totally different. The first time it happened was just over a month ago. I had taken my morning tablets and a few minutes later I could feel something trapped between my gum and my cheek. I couldn’t think what it was or shift it, by moving my cheek around and I couldn’t reach it with my tongue. I had to put my finger into release what turned out to be one of my Morphine tablets. I hadn’t felt anything between taking them and finding it sat where it was, but between the two I had walked all the way from the kitchen and sat down here at my desk. The same thing has happened over and over again with food since then. On a few occasions it had been up to an hour after eating, I have found food trapped in exactly the same way. It is one of those things that when you are on your own, isn’t really a problem at all, but no one wants to sit digging things out of their mouth when in company. I have been questioning it over and over as to what is happening and why? There is only one answer, my nerves just aren’t working properly. Just as my legs vanish totally, then return, it appears parts of my mouth is doing exactly the same thing. Not surprisingly, this only happens on the right side of my mouth, the same side as I am losing the external sensations. It appears it is far more than just skin deep.
I think it was about two, maybe even three months ago now that I wrote about an occasion when I was eating noodles and one was somehow lying across the entrance of my throat. Normally if food or anything is sitting like that, instinct takes over and your body deals with it without you even having to think, mine didn’t. It just lay there, I could even breath around it, probably a stupid thing to have tried, but I couldn’t resist trying. All the way through my normal reflexes remained silent and shut off. I remember writing about it as I thought it was such an odd and one-off kind of thing to happen, it too has turned out not to be odd or one-off. Nor has the occasions when I have swallowed food and thought it gone, only to find it returning to my mouth later, much later. It goes in tandem with food simply sticking and refusing to go downwards and I have to force it back to my mouth to try again, usually without a problem. I have grown used to the tingling and numbness inside my mouth and I am reasonably sure that my tongue has grown used to being bitten frequently. Clearly I haven’t mentioned any of these eating problems to my doctor. I don’t need to be sent back to the Speach Therapists, or the OT’s. I don’t need to be shown all the techniques of how to swallow or deal with stuck things. Nor do I want them to decide on my behalf that I need to thicken all liquids to ensure they don’t land up in my lungs. Yes, I do know what they would say.
Although the worst and strongest sensations are all on my right, it is also happening on my left side, just not quite so pronounced. Some of you might remember my telling you about occasions when it has felt as though the skin was actually sliding off my skull. Or yesterday when I described it feeling as though the center of my face had been gouged out. Sensations that cover my entire face, just as the itching sensation that leaves me wanting to scratch right through to the bone. To be honest, the itching is the only one that drives me nuts, as the rest are odd occurrences throughout the day, they happen and they are over. The itching starts and just goes from there. I spend a large part of every hour scratching at some part of my head or another. To be honest it is so much part of my day, that unless it starts leaving shadow lines from my nails, I’m not really aware at the time of doing it, it’s more a realisation that I am doing it yet again. The shadow lines as I call them, aren’t being caused by the sharpness of my nails, more by the numbness of my nerves. I call it a shadow because that is how it feels, left behind by what has long since passed. Whatever is happening, is happening to my whole head, it is though clearly centered around my mouth, neck, and right side.
I thought that I had located all of the different things that were happening, from invisible dribble to not being able to breath, what more could there be? Adam corrected that one for me last night. He was yet again asking me if I was going down with a cold or was my nose blocked. He has been asking me that on and off for weeks and my answer is always the same. This time when I answered “no” yet again, he asked if the side of my mouth was numb just then, he had it. The numbness in my mouth can actually be heard, it’s affecting my speech. I had though a couple of times recently that I could not just feel it moving wrongly, but that I too was hearing what I would say sounds slightly like a lisp or a slur. I tested it by talking as much as I could and he was spot on, my numb wrong feeling face, really was changing how I spoke in more ways than I had already thought of. Spending so much of my day alone, means that I don’t talk that much, so it wasn’t something that I would pick up on. Adam has for the two or so weeks almost driven me nuts, asking if I had a blocked nose, now I understand his question and I kind of hope it will stop.
Bringing all this together just shows a clear picture of progression yet again and one that like all the rest isn’t really going to change anything. No one can do anything about it, I wouldn’t have lived with a dead hand for a nearly a year if they could. When nerves die or start shutting down like this, all that can be done is exactly what I am doing, nothing. They will either continue along their path, or stop here and heal, or most likely, they will continue, die and if I am lucky, reroute and bypass the dead area. Today, the numbness is has spread closer to my right eye and is lower onto the tip of my chin. Nowhere is totally dead, but the worst area is still centered around the corner of my mouth on the right-hand side and seems to be still growing.
Please read my blog from 2 years ago today – 25/08/2013 – The good within the bad
Two Rooms Plus Utilities 