My day is once more running behind but for once it isn’t my fault. I actually was up an hour early this morning as I woke unable to cough and really bad pain in my throat, sleep wasn’t going to be an option, so I just got up, with the thought that I would be able to rattle through everything and have an early sleep this afternoon. Adam has taken a long weekend so he is still asleep but is actually going out this afternoon to see his mother for a couple of hours in town, be he woke and we had a chat before I got started, but it has been stop-start since then. I seem to be rather bunged up with this bronchitis, but the pain I woke with has now almost gone, I guess I was breathing through my mouth all night, but I have been coughing all morning. Then Jake called, he was looking for one of his long chats about nothing, as he is the only person I speak to other than Adam, well I never like to put him off as it’s nice to hear another voice. I am now up to date with every place his work sent him last week and every sale that he made, not that I am overly interested in credit card sales, but as I said the other day, what is there to talk about when you do exactly the same thing day in day out. One of the good things about having Jake as a friend is we knew each other through the music business, so we shared a large number of acquaintances, some who he still sees occasionally. Just chatting about old times really helps to keep it alive, even if I can’t remember half the names he comes up with, I do remember the venues and many of the stories we share. We may just speak once a week and normally for about 20 minutes, but it is probably the reason that I still remember my life from moving to Glasgow so clearly, when my life before that grows mistier daily.
I was asked on twitter today how I deal with overactive nerve sensations, I gave my stoke answer to it, to talk to their doctor about taking Amitriptyline. I know that many people have problems with taking it but for me it has really be the best medication for nerve pain, it can also reduce some of the mad sensations, but it doesn’t stop them and I know nothing that does. On the surface when you say to someone that you have pins and needles, or numbness, well their reaction is often that of “So what?”, which has never really surprise me at all. Everyone on the planet has had both at some time and for most people they are short lived and annoying, nothing more than that. Imagine your entire leg alive with the nerve sparks of pins and needles, not for a few minutes, but hours or even days, annoying doesn’t cover it. Once a sensation like that has been triggered it can often just get worse and worse, even turning into pain as it intensifies, or suddenly dropping to a constant tingle, but whatever it does, you can’t ignore it. Sometimes just like pain, massaging or applying deep pressure can help to ease them, but more often or not it is a case of just waiting for it to go, believe me, you can get really wound up by something sounds that small.
I remember one silly spell when I had with pins and needles in my hands, they were very slow moving and I started to get the feeling that they were moving in a pattern. I started to track them by touching the next spot I thought would fire and most of the time I was right. It was a bit like playing an electronic version of Simon says, tapping out the pattern and predicting the next point, but my hand was the machine. The pattern was there but would occasionally shift and would loose it for a while, it was really odd being able to play with my MS, rather than cursing it.
Numbness is a very different story, it is actually scary for me as I have written many times about losing my left hand, the whole hand was dead and clearly an extreme version, but there is now permanent damage in both hands. Numbness puts you in danger as you don’t only not feel objects correctly, you also don’t feel heat either, so things like cooking become a danger zone. For many years before I even knew I had MS I used to joke that I had Teflon hands, as I seemed to be able to hold on to a hot object far longer than others could. The truth was I wasn’t feeling the heat as everyone else did and yes I also got a large number of burns without knowing it had happened until I saw the burned skin.
We have all at times been sitting or lying in a position that cuts the blood flow to one of our legs, resulting in the whole leg or part of it going numb for a short spell. So all of us know what it is like to put a dead foot on the floor without being able to feel it at all, walking feels impossible, as you can’t tell where your foot is, well again that happens in MS, but nothing to do with blood flow, just nerves. It can make you walk in a very peculiar way, if you have bare feet, well again you can easily cut your foot without even knowing it has happened, with the following danger of infection. Nerves can create all kinds of sensations, I have touched on a couple here and spoken about many in the past, there is nothing they can’t do if they want to and there is nothing you can really do about it, other than try to disrupt their messages by applying pressure, pinching or rubbing. For those who have so far not had to live with a nerves system that has a mind all of it’s own, please trust me it isn’t something you ever want to live with, their names may make them sound trivial, but that is the last thing they are. Living in a body that is never silent, always giving you false messages, constantly interrupting and disrupting your life, is a place none of us ever want to be.
There is no medication I know of, well none that have worked for me and there is no limit to what nerves can do, long before they get to the point of causing pain. Some people have found relief through alternative therapy, which is why I am about to say that all you can do is try anything suggested and see for yourself the results. All of our bodies are different and how they react, is just as different. There might be something out there that will bring some relief and if you are suffering badly just now, I really hope you find it soon.
Please read my blog from 2 years ago today – 28/02/12 – Optimist of Pessimist?
I realised today while chatting with a friend that we all make assumptions when it comes to our own and others health. She knows that I have MS and had assumed that I have relapse remitting just as she does, I don’t I have relapse progressive, for those who don’t know there are several variations within the Multiple Sclerosis family. The most common is relapse remitting which kind of……
And from – 29/02/12 – A vanilla cure all
If there was a smell in this world that I would hate to never smell again, for me has to be Vanilla. Pure Vanilla, not mixed with magnolia or any of the other things that air fresheners insist on adding. Vanilla to me takes me back to being a small child and before anyone jumps in with a connection to ice cream, well you are wrong. My mother used to make what she called cornflour custard…..
I don’t know of a medication either, but a friend recommended Benfotiamine, a synthetic form of Vit. B1, and it has helped me very much with numbness in my hands. I take 300mg a day.