In harmony with ourselves

The second I stop moving, almost my entire right side starts going numb. Stay still for a few minute, and a gnawing cold settles on my skin and starts heading for my bones. The secret that I have to keep reminding myself about is to not sit still. As long as there is even a vibration traveling through me, it stays below my sensation levels, remove it and the cycle begins. It’s been happening in my legs several months ago now, the right worse than the left, and as I reported the other day, the lower half of both legs, appears to be numb most of the time now. When it began, it began just as is now happening in other locations as well. Stay still, and a small area about the size of a 10 pence piece would vanish into numbness, slow it would intensify and if I didn’t stop it there, it slowly spread out to take over my entire lower leg. Over the space of several weeks, it became stronger I suppose, as it didn’t need me to be still all over, just still in that limb, and it’s strength kept growing. Now I have no control over it what so ever, I could get up and dance, and it would stay numb. Once the nerves start the process, it continues until it chooses to leave, or I go to sleep. That, though, isn’t always an answer, I often wake now, with my entire leg numb.

Almost always, it started on the outer edge of my calf muscle and spreading from there, until it encompasses my entire calf. Within a few weeks, the same story was true of my thigh, but there were two trigger points, on one the upper surface of my knee and the other on the outer edge of my thigh. Just like my lower leg, at first, I could distract it, and it would retreat, now movement doesn’t work. Together they are like some sort growing web, spreading over my skin, reaching out for each other. I wasn’t that bothered about it, at first, as like anyone with any form of MS will tell you, numbness is normal. In fact, MS has a trick I haven’t heard of from any other condition, other than those that do major nerve damage, you can be numb and in pain, at the exact same second. We all go through odd phases, where something like this will just run rampant, driving you mad, then one day you wake and it’s gone. I don’t think that over the years, there is a single inch of me that hasn’t been numb at some point. A few weeks with numb legs, so what! Then it suddenly also appeared in the outer edge on the right side of my ribcage, followed a couple of days later, on the right side of my face, then my right arm. I have no located about 14 different points where this spreading numbness can and does appear. Sometimes it just spreads locally and goes, others it keeps growing until it meets up with a neighbour. It feels like my entire right side is slowly turning to wood, as this numbness could also be described as a sensation of my skin and a couple of inches below it, solidifying.

I can’t be sure, but if it is just the dropping temperatures and that the numb areas are hyper sensitive to it, or if it is just another screwed up sensation, but any area that starts to go numb, now also feels as though shards of ice have been shoved into it. The intense cold is at times painful, as I said, numb and pain, are totally possible in the same place. It may seem odd, but I am far more bothered by the cold than I am, by the numbness or even the odd solidifying sensation. I hate being cold and as it doesn’t matter how many layers I put on, or even if I sit right in front of the fire, this cold goes deep inside and it doesn’t thaw. Again, I have been attacked by penetrating cold in the past, but then it was in tiny areas, just half a hand, or a small area or my face or foot, but two nights ago, about a third of one side was frozen to the core. Sometimes, it can really feel as though your body is out to drive you as mad as possible. That it seeks out, the things that you hate the most, then works on finding ways of putting you through, just that exact thing. I have spent many summers cursing because, I can’t find relief from the heat, something I know many will be able to empathise with. This is just as bad and in some ways, worse. Our bodies are self-programmed to run from the cold, we know how easily it can kill and how important being warm really is. You can’t run, from what doesn’t really exist. You can’t compensate for it, cure it or even change it. Your body is locked in a discomfort so intense and you’re totally powerless. I know it’s not that long ago that I wrote about how disturbing losing my calf and foot was, now I don’t just lose it, it then, throws in cold to make sure I haven’t somehow noticed its oh so clever trick.

Last night, it even managed to stop me from going to sleep. I had woken in the wee hours of the morning, desperate to go to the loo. My first steps were somewhat faltering, as standing on a foot that is busy telling you, it’s not quite there, isn’t that easy, but compared to going to sleep on my return to bed, it was easy. I defy anyone, to actually sleep when one side of your body feels as though you are lying on an ice rink. I don’t know how long it took for sleep to take over, it did, that’s all I know, but I also know that I tucked that duvet in tightly around me, far more than once. Life when you can’t trust your body is hard to adjust too. When your tired and all the logic in your life is still hours away, it’s even harder. You can tell yourself a million times that what your body is feeling, isn’t really there, but, when it’s equally screaming at you, saying “I’m cold”, “I’m in pain” or whatever chosen sensation it is that day, all arguments fall apart. We automatically, trust those sensations, those messages, that have got us through life in one bit. Having to convince yourself that that story is now a lie, just doesn’t work. How long do you hold your hand over a candle, before you accept that you’re really being burnt? Well, that’s how fast our brains join in the argument, and it has learned to trust those feelings, not you.

Is it any wonder that we are always tired. Our lives have become one long argument and always without a conclusion. We all know just how tiring one argument can be, imagine a million per day. When your body starts lying to you, and every single action you take has to be double and triple checked, you, at first, look for any distraction. Hence, I believe why I never used to sit still. There is a point in every situation when distraction fails, then you’re caught, trapped in that argument and you know totally, that neither side can win. All you want is peace, a moment where your body, just works like everyone else’s, when you can be at peace with it. I have reached that point. The entire side of my body, can’t be numb. There is no way that it’s -10 on one side only. All I want, is a little peace and quite, a body that’s in, if only for a few moments, in harmony with itself.


Please read my blog from 2 years ago today – 14/12/2013 –  No more walking

Last night was the night from hell, it was my own fault as I had quite simply been on my feet far too much but I had a task to carry out and I wanted it done. Yes I know all about pacing but there are times…..

A missing clue in time

Things are wrong just now, I can’t really put this into words easily, I have been trying, trying to formalise it clearly so that I can at least explain it to Adam, but the more I try the more it remains a muddle of what I don’t know. Things are just wrong, very wrong. I can sit here on the side of OK and type away just hoping that it will become OK again, but then I have to stand up, I have to do something and suddenly it is all wrong again. It’s like my entire body has gone numb and my mind as well, I just want to hit the floor and remain there as it is safe, I don’t mean I want to collapse or that my balance has gone, I just want to be where it’s safe. I have to keep walking, go on to where ever I need to go but as I walk I often find that my stance is all wrong, one side of me is somehow dropped and is out of it’s natural position, but where it is, is comfortable but has to be corrected. My body is some how twisted and almost as thought I am mildly hunched and even when I am sitting I know things aren’t right, I am drifting and slipping off into nowhere, escaping what ever I am supposed to be doing, my concentration just vanishes and everything takes so much longer to do. All my limbs keep leaving me, passing into numbness with a core of MS pain and just for fun my ribs join in with what feels like a never ending tightening corset. Yet there is nothing clear, nothing that I can say this is wrong, this is the reason, but I haven’t got one reason to pin anything on.

Adam knows there is something wrong, he keeps asking and when I say I am OK, he sits and stares, so I admit I’m not right but I can’t give him the answer he is looking for as I can’t explain it beyond what is here. He comes home for his lunch and I almost have to physically push him back out the door to return to work, as he just doesn’t want to leave me, yesterday he even tried for the second time this week to put me to bed before he went. I have to admit the idea that I should just go so he had peace of mind did occur, but I would have been up again as soon as he was gone, I just couldn’t lie to him so I simply reassured and pushed him again. I keep searching for the answers and give up by disappearing into sleep, but even there I am no longer safe, I keep being woken by that pain in my heal. I have even tried sitting here stepping my way through my body, checking off each section, noting the symptoms and then moving on. Still I don’t have an answer, other than everything is just wrong! My energy is drained beyond just wanting to sleep, it feels like it is gone completely with no way of recharging. There isn’t a part of my that wants or can be restored, it is as thought my body has just given in and doesn’t want to fight any longer, as it is just too much. Strangely despite how it sounds, I am far from given up.

It is over a week now that I have been aware of everything being out of kilter, there isn’t a single symptom that isn’t heightened, but worst of all is this feeling that when standing I am just totally unsafe. I just can’t work out why it feels that way, I know that my vision seems not quite right, which alone if it was bad enough would explain much but it isn’t bad enough on it’s own, it’s just bad enough to be aware of it. When I sit still, totally still, it often feels as though I am in a bubble, as thought there is an outer shell following my body contours just an inch or so larger than me, everything feels numb and tingle but the sensation is reaching out to fill my bubble, just as thought it is all bigger than me and totally in control of how I feel. I know that I am making a really bad job of explaining this but how do you explain what makes no sense even though I know all to well I have felt this way before, this time though it is lasting far longer. It has to be at least 4 days that I have just wanted to disappear because that way I wouldn’t have to deal with anything, I could fall into a sleep and remain there and that is the over powering driver of the whole thing, I want to fall into a hibernation until I can wake feeling as I normally do. I know that I love puzzles but I love puzzles that I actually have just a chance of solving, I don’t believe I will be able to this time, as I very much suspect that it will pass and I will still be left wondering what it was all about. I hate not understanding what is happening and I hate it even more when it is happening to me. With the pain and numbness in my hands and legs there almost all the time, there is little peace at all just now but I have had that more often than I could ever remember. It is those really strange sensations that are upsetting me the most, along with the lake of concentration.

Nothing in my life ever seems simple these days, there always has to be something that destroys the peace of life. Even when ill there is this illusion that life is should be quiet and sedate, that being housebound is somehow a gentler way of life where yes, you are ill, but little else happens. The truth is that your health takes over every sedate moment and turns it into a trial which there is no escaping from. Illness isn’t the odd event that happens but it is a constant trail of events that never give in, whether or not we can understand them. I know this will pass just as everything else does and it will reaper at some other point in time, maybe by then I will have the missing clue as to what is wrong.

Together for ever

Well today is fun, I’ve mentioned a few times recently that my hands are causing me a few problems, well today they have entered and entire world all of their own. Every evening lately they have been either sore or numb or if they feel like it both at the same time, but I knew where it was coming from, all my typing during the day. Hold on whole I explain as it isn’t quite what you might think. My figures have been feeling in numb and slightly enlarged causing a restrictive movement, to look at them they are OK. In the way I described the other week with regards to my feet, it is like they to are now wrapped in marshmallow, my nerves are somehow extending outside the real restriction of their real size and shape. The result of this is really annoying, I am hitting all the wrong keys. I touch type but when you are not sure were your fingers are, in relationship to each other or the keyboard, well to say the least the result is interesting and exhausting. I am retyping word, after word, after world, in an attempt to get it close enough to allow spell check to fix the muddle. When my fingers are moving there is no real sensation out of the normal, what they do is pot luck but well they don’t hurt, when I rest them, in flies the pins and needles and the tingles.

Last night they were actually puffed up after their day of more than double the normal amount of work they are used to. The muscles where shot, just throbbing and feeling enormous, I spent most of the time sat watching TV just messaging them, but they felt almost set, if that makes sense, as thought the muscles had stiffened into a place that although they still worked, somehow had become like soft wood. It isn’t just my fingers but also the palm of both hands, they were the first area to developed the solid sensation and the areas that seemed to demand the messaging. When I went to bed where usually I spend the first 10 to 15 minutes, with my legs and feet giving me hell, last night my hands did to. Usually I just have to relax the muscles slowly until they reach the point where sleep is possible, it is a system I have used for years and still works quite well, I had to do exactly the same for my hands.

I have now for years been unable to make a fist with my left hand but just now I can do it with neither. If it ended at my hands then fare enough but this morning it stretches through the muscles right up to my shoulder, just as my hands nothing until I let them rest and instant setting and a tingling numbness appears. My dexterity away from the keyboard is just as interesting and well tested, today is the day for the shopping to arrived. Keeping the individual items safe until they reach their storage space has been a challenge but I am slowly getting there. I was lucky today as it was the really nice delivery man that I see frequently, that frequently that I think he now knows when things are easy or difficult on that day. Usually the shopping is just left on the floor in the hall, but he took it upon himself to set all the fridge and freezer shopping and all the fruit on my kitchen counter. He knows me that well that he even left me a space on the counter, so I could sort out each bag, now that is service!

This is the first time that my symptoms are symmetrical, I am so used to everything being my left side, only or worst that I am really find it odd that it is fairly shared, both index and thumb are the ones that have gone stiff and numb and both outside two fingers are sharp nerves and tingles. Both are slowly over the days getting worse at the same rate as well. I notice yesterday evening that when ever I was on my feet that I was letting my arms just hang and move with my body as though they didn’t work at all. Just dangling was the most comfortably way, as guarding both just wasn’t possible. All the fun of having a nervous system that have given up having any systematic reasoning.