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…..
WHAT I WANT TO SAY, I CAN’T. TO SAY I UNDERSTAND WOULD BE A LIE.I KNOW PAIN AND NUMBNESS, BUT NOT EVEN CLOSE TO YOUR LEVEL. THE ONLY THING I CAN SAY, IS THAT I HOPE AT LEAST YOUR STOMACH HAS SETTLED, NOW THAT THIS MONSTER HAS GROWN. I’M SO SORRY. THINKING OF YOU ALL DAY AND NIGHT.
I don’t have Internet at home anymore but I wanted to tell you, how much I enjoy and benefit your blog. I’ve been diagnosed and started copaxone just a yr now, and you’ve helped me so much. Thank you for being here and sharing your life and struggles.
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I hope that you can still read when you find access and I hope that the treatments work for you.
Take care (((Hugs)))