When nerves die

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 pickĀ 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

Writing is a strange process, things just pour out of your mind into an empty space without any great thought process behind them, there hidden inside and then suddenly there in front of me. I often have found in the comments people saying that they are impressed at how….

The problem with talking.

I am so far behind with everything that I normally do today, I having one of those fog days, which I am sure most of you now know about, unfortunately so do I. I have again this morning been trying to sort things out with the OT and the therapist and it seems that no one wants to talk to me today, all I get is answerphones, engaged tones and no answers. Usually Monday is a good day to make phone calls as with the fresh week those you want to talk to haven’t had time to get wound up by work and are happy to take the call.

The problems that my MS have caused with my speech whines me up all the time, it is one of the things that others noticed quickly when my MS turned progressive. I had always had times when I lost words or I stuttered a little but it wasn’t occasional it started to be all the time. I was taught all the tricks of talking more slowly, breathing and so on but they are all very well in the house, when you are sitting in a meeting with all the directors and you loose all that you have planned to say, and just sit there stuttering, well it isn’t fun believe me. The problem always gets worse as well once it has started, frustration just makes these sort of things worse and it is a wild spiral into a mess that causes an emotional reaction, and as I have explained before, when my emotions get involved, I cry. Not quite the image that you want others to have of you in the business world. To be totally honest I would have given anything to get control of all those things when I was still going into the office and had to go to meetings, it was another of those great pluses that came from being housebound, no more meetings. Having others take notes and email them to me and them reading a well laid out proposal or opinions was a huge boost for me, strangely not being there meant they saw the real me.

I notice with people I didn’t know, like when talking to a shop assistant, their faces showed clearly that they thought I was some sort of annoying low life that they had to put up with, clearly I was thick. Not being able to talk clearly is as bad a being pushed in a wheelchair, people immediately connect it too you intelligence and ability to be a person in your own right. It is bad enough when stranger treat you like that, but it even worse when it is people who should know better. I have had on occasion the same reaction for Doctors and Nurses, even when people try to be patient and let me complete what I am saying, it is often still clear on their faces that they are having to hold back from jumping in. It is another one of those things that I see even in Adams face and often he can’t help himself when he isn’t in a good mood, he starts guessing what I am about to say and completes vocally for me, I hate that. I do occasionally ask for help but that is a very different thing.

I am not sure which is worst the stutter or the forgetting, in someways I suppose the forgetting, it will occasionally attach to the stutter. I will get stuck saying a word, and my brain will then for a laugh, remove the word I have started to say. It is hard to explain what it feels like when you intelligence is insulted, as that is what is going on, I feel like I am suddenly 4 yrs old and my words are being completed as like any 4 year old, I don’t have the correct vocabulary to be able to do so myself. It really hurts, not on the surface but deep inside where the person who I protect lives, yes we all do actually have a 4 year old inside us and we all know how easily it can be hurt. All of us prize our own abilities and intelligence, and there is no greater, or worse insult than for another person to attack it.

Unexplainable Loss

The other evening I was talking to Adam on the settee, not a big deep conversation just the normal chatter sparked by the TV programs. I’m so used to not being able to find the next word, that that has just become the way I talk, stutter, silence, words, stutter, words, silence, but on this occasion the words didn’t just vanish so there was a pause, all words vanished, I sat there totally lost not sure what to do or what was happening. I know it was only seconds but the first thing I said, well actually shouted, was “AHHH, I’m never going to talk again”, as I slammed my head down towards my knees, failing to even manage that as my head stopped a couple of inches above them. I was trying to remember the name of the rehab hospital for the forces not far from Glasgow, a place I have been, and I have raised money for in the past, but I could find nothing to even help the word appear. If that had been it and the word or others appeared, it would have been fine, but I was aware of searching madly in a total blank and suddenly that search stopped, there was totally nothing not even words in my mind circling to get there, nothing, a total void. It lasted seconds but I know it happened, and I know I have never had that happen before. The words that came out were the actual first words I found and they came from deep inside as a scream of fear. For seconds or even less that was my heart felt fear, that no words would appear and no voice would be able to get them out.

MS and many other illnesses effects the brain and speech is a normal thing to be attacked and to become difficult to impossible form or be understood. The closest I have seen to the way I feel is those who have had mild strokes, I recognise the look in their eyes, as they try to be understood, searching and trying desperately to push the words out of their mouths. I can empathise as I live there with them a lot of the time. My speech is very varied through out the day, the more tired I get the worse it gets. I hear in Adams voice a frequent frustration with me when I am at my worst and if he is tired to the snaps and jump-ins increase until I have to stop him as he winds me up more and more resulting in everything getting harder. We all forget words when talking from time to time and I am sure you know yourself that you do it to. I remember that annoying feeling from years ago myself, but this is so much more and so much more frustrating. I know, and I can prove it is a speech center problem as I can sit here and type endlessly without the same issues, the words spill out one after another with just the odd pause to think or correct.

We all take speech as an automatic process and a something that will be with us for life but that isn’t the truth for all of us. There is no hard or fast rule it could happen that I am the one talking if badly, to my end and you with normal health now, could be the one unable to form words, but the likely hood is the opposite. Being a progressive condition my speech will progressively worse, I fear that the seconds of the other evening will grow to minutes or even to forever.

Looking into myself and explaining to you or anyone else is hard if you have no near experience, the closest I can get is probably to say that it is a little like when you are in a deep sleep and someone is trying to wake you. In your head you hear their words, part of you is trying to answer and part pulls it into your sleep, desperately trying to fit it into your dream, so you can ignore it and muddling it up in your mind, reality and dream fighting each other. If you have understood that part, now add into it that the first part which is answering is distracted by the dream and it can’t get the words out. Now add frustration, then suddenly the dream disappears, what you are hearing makes sense but what is happening has turned to nothing, even the confusion vanishes because you know you are in a void, unable to go back to the dream and also unable to respond to the words you still hear.

I don’t know if it will ever be as bad as that again but the odds are it will and it will get worse. I hope that what I have written make sense to most of you as I feel I am writing about the unexplainable, but I have tried as I always do.