New leg please!

Well it happened I woke up this morning early because of the pain! What is it they say about don’t mentions something or it will happen, my fault then I guess. It was extreme nerve pain that got me and it still hasn’t totally gone away, just eases for a while then bang, it is back again. It feel like I have a red hot piece of iron stuck into the my left instep as far as it will go but being stopped by a plat, equally hot searing the bottom of my foot from my instep to my heal, with a little extra boost to the right side of my heal. If that isn’t enough the top of my foot is numb but the same sharp pain is running up my shin bone to just below my knee. It isn’t made worse by standing, which took me a while to find out as my instinct said that standing would make it a lot worse, but no, it is just the same, which is rather odd. It’s now 3hours since it woke me and although it has eased in it’s intensity it hasn’t gone and with each wave of improvement I want to go back to sleep, then it flies back at me with revenge. I have had much much milder versions of this over the last 6 months or so, but this has gone from level 2 pain to level 10 in one move, one of those situations where under my breath I am begging the world to just cut it off and give me peace!

It has been a while since I have had pain this bad, I wrote a few days ago about a bad bout of nerve pain, I haven’t actually had peace from it since, the difference is that is a pain that came and goes in a few seconds, this is static and although it calms it isn’t going away and it seems to be causing mild spasms in my calf muscle as well. I really don’t like that leg at all at the minute, and I really wish it would stop. I have had a lot of numbness in my left foot recently and much of that is still there today, I managed earlier to press my fingers into my heal and although until I touched it, it felt as though it was burning, when I pushed on it I discovered that the burning isn’t actually on the surface of the skin, but it is about 2 centimeters inside, the actual outer layer is numb, then the mad burning and sharp gouging feeling beyond that. I keep moving about and changing position, but all that changes is the pain in my thigh, which I know is a long standing pressure problem. Spend your life sitting and you simply can’t expect anything else. Although I have taken all my meds I am really tempted to take a boost on my MST, but I’m not sure that that would help much, as taking a fresh dose has only mildly changed it.

I guess I am not going to be a happy bunny today so apologies in advance to anyone who gets a curt answer from me, but I don’t feel particularity sociable right now. Anyone who lives with pain I am sure will tell you very much what I am going to say and that is we try to not let it effect our mood but it’s hard not to. Even when you think you are covering things up well things you say and they way you say them are changed by the pain levels. It is one of many reasons why have a job is difficult, people make excuses and exceptions for you, but that isn’t something everyone will do for ever and to be honest why should they. Being surrounded by people who are demanding things of you, when you are fighting like mad against the pain and to keep your mind on your work, can very easily just become too much and without meaning to, you will snap at someone. I have to admit that I was relieved to be working at home in the end as I didn’t have to deal with others. I didn’t have to think what I was saying and how I was saying it, as nearly all contact was by email and I had time to think about, and how I was replying. I think all to often that people like me stop working not because they can’t deal with their illness, but they can’t cope with their illness and interactions with people. The combination is one thing to many to expect anyone to actually manage for 8 hours a day, 5 days a week, it take a miracle to get through all that time without upsetting someone. I really have now given up all hope of getting a job, I haven’t even had a polite reply to any of my emails for over 4 months, I am ignored totally now. I guess I just don’t fit what anyone is looking for and why when there is such a huge pool of people at all levels looking for work, a person with a problem is easy to dismiss from the selection process.

The gaps that are found.

I have noticed something in the last few days that has made me smile to myself and even go as far as the odd snigger. I hadn’t noticed this but I guess like many other things it has sneaked up on my slowly, but I seem to now have long complex conversations with myself in my mind. I know we all do it to some extent but I now hold and rehearse constantly, the less able I am to put those words out there the more I am running madly around in my head trying to make up for it. It is the strangest thing to know that I can think and say in my head just what I really want to come out of my mouth and it just doesn’t happen. I never thought that loosing my unthought ability to talk would be like this, I some how thought that the stutters and lapses would be there in my head just as they are there when I talk. I thought that I would have as much trouble in finding the word spoken or thought, I mean how come when you are talking can the words disappear yet when the same conversation runs in my mind every word arrive in order when needed and without gaps. It is a crazy way to live your life. I have even wondered if I would be better when it comes to anything that is important that I don’t try to talk, that I write it all down and hand my notes over as that way I can prove I am not the idiot I sound. I suppose there will be many more discoveries and odd things to happen to me as time moves forward, the good things is though I have this purpose of writing how they feel and what they really are like to live with.

I am once again having great problems with my left leg there is pain down the whole length from hip to toe. It is always hard to know what to do with it when it is like this, it is a case that if I stretch it one part hurts if I pull it back to a seated position a different part hurts, a true no win situation. On the good side this morning, unlike last night, I am not wishing someone would come and chop it off. If that had been carried out on wish I would long ago had no limbs at all, it has been I admit a common thought screaming back as loudly as the pain screamed at me, no one means that type of wish as in reality it is a wish just to get the pain under control. I have accepted now that I will never have a day without pain ever again in my life, my life is different levels of pain and it appears that no one can do anything about that in any way or shape or form.

There is one pain that I find scary and I suppose the reasons for that are simple but I frequently get spells of pain in the side of my head and face. I suppose I worry as there is always that worry that it isn’t a nerve but a stroke of some kind. Because of the mobility issues that MS cause it is easy to imagine that it is just limbs that cause pain but it isn’t. I used to get a lot more pain in my head and face than I do now, but when it is there it is normally a hard one to deal with. Unlike a limb that you can rub or stick your figures into deeply to break the pain, when pain is a flashing nerve over the surface of your scull, or a long constant pain, there is no flesh there to really work on. If the pain is inside your scull there is nothing at all that can be done. It is not just pain but numbness that can take over one side of my head, spreading forward to the mid line of my nose, that to is concerning, as well, it feels as thought the muscles are sagging as they do when you have an anesthetic and as I would imagine again with a stroke, but a quick check in a mirror shows all is fine. Numbness is always a strange thing to deal with, a dental anesthetic is really the best description of how it feels as parts of you just disappear, it might just be a small isolated area of even a whole foot, but when a tennis ball sized area suddenly vanishes there is nothing that can be done other than hope it will return. It adds interest to a day as well you never know what next is going to happen, will my leg work, will I be able to feel my fingers, what will happen on any one day. The truth of MS is that it effects everything, there is no part of your body inside or out that it will not play with when ever it feels like it. As I said variety, but in this case I’d rather have dull normal.