I feel this morning that my body is now in completely in two parts, the top half, warm and quite happy with life, the lower half cold and in pain, which kind of tells me that it isn’t the temperature that is that wrong, but me. I admit that I do have one more layer of clothing on my upper body, but I have a sleeping bag tucked round my legs, which should more than make up for the missing layer, yet they are still cold. I mange all through the summer to control the temperature around me so that I don’t suffer the debilitating heat that wipes me out and makes bed the only place where I can survive. For most people with MS it is the heat of summer that they dread, but with time you learn what the triggers are and how you can keep cool, keeping the curtains closed, drinking iced drinks rather than hot one and of course cold foods only, light clothings, cold showers, living in Scotland, the list goes on, but it is always easier to get rid of heat, than it is to create it. Just like heat, being too cold affects some of us as well, it is another of those things that the more people I talk to, the more that I talk to the the more I am finding and I can’t help feeling that it is another item that is missing from the symptom lists. I for one actually find cold a bigger issue than heat, as it can actually cause real pain and being cold is a really miserable feeling. Cold is something that is not just around me, but something that my body has learned to create all by itself. I am sure that my lack of mobility plays it part, but I am also sure that there is a bigger picture going on around it, I can only guess at some of this, but I kind of hope that it resonates with others and they might just be able to confirm or blow out of the water one of my theories.
I have become convinced that the worst of the cold in my lower half has far more to do with my lack of mobility has caused a new problem and that this isn’t just about nerves. I have been unable to manage any from of movement other than wobbling my way around my flat for 7 years now, so it wouldn’t surprise me if my body isn’t exactly working to it’s best possible levels. I suspect part of it is down to poor circulation, if you don’t move you get cold, especially when the outside temperature is lower than normal. I don’t think that is enough though to fully explain it, especially when it comes to the fact that the lose of temperature in set areas, like the inside of my right thigh, being much colder to the touch as well as my internal perception. We all know that our skin can produce the sensation of freezing or burning skin, but when we touch those areas, they are a perfectly normal heat, that is part of MS, or in fact any nerve damage of any sort. Recently though I have discovered that the lower half of my body isn’t just getting messages wrong any longer, it now actually feels to my touch to be colder than my top half, regardless of the number of layers. What I think is happening is that the nerves have become so skilled at lying, that the rest of my body is now believing the lies. Our body moves blood around us adjusting how close to the skin surface the blood gets in line with our perceived body temperature, to hot and the blood is near the surface, trying to loose heat, to cold and it withdraws the blood from the surface so that we don’t loose essential heat that our bodies need. My nerves are sending back the message that it is cold down there near the floor and my blood control has gone into retreat, trying to preserve my temperature. The result is my skin now feels cool to the touch and isn’t giving off any heat, heat that is needed as it is then trapped by my clothes and trapped heat keeps me warm. The system has failed, the only possible result left is I just get colder and colder, it doesn’t matter how many layers you have if there is no heat to trap, you remain cold.
Short of strapping hot water bottles to my legs, I am at a lose as to what to do. To be honest sitting inside a sleeping bag all winter with two of those microwave heated sacks by my feet has been my answer for the last two years, but there is a downside to that, safety. I have lost count how many times I have found myself on one foot dangerously close to falling over due to my lack of balance. Or how close I have come to going flying as I try to untangle myself from all that cloth as I have to head to the loo or the kitchen, or worse still in a hurry to answer the doorbell before the caller leaves believing I am for some odd reason not here. So far this winter I have kept the bag open and just used it more like a blanket than a bag, but it isn’t really working any longer, hence my now choosing to write about it, I am sat here so cold that it really is getting painful in it’s own right. It isn’t any longer just during the day that I am having an issue, the last couple of nights I have found myself lying there with my legs and feet so cold that finding the right right temperature has delayed my going to sleep. On Friday night I actually did put the electric blanket on before I went to bed, it was really nice to get into a warm bed, but I quite quickly found the upper half of me boiling and to make it worse, it didn’t cure the freezing pain in my feet, regardless of how I positioned them, if anything it made it worse as I was over aware of the areas that remained cold.
I know nothing in life is ever easy once MS takes hold, it is also one of those thing that because it takes so long to get a diagnosis that we often find us doing a post-mortem on our own lives. Those light bulb moments are frequent visitors once you and your doctors have pieced together a history of over 30 years and sever cold has been an all to frequent visitor. It doesn’t seem to respond either to keeping the house warm, it helps, but when something is produced by your own body, all the central heating in the world, won’t change the core problem or the area’s it effects. To find yourself sitting slightly too warm or to the point that you want to remove a layer, but to have searing pain in your leg as it has once again turned to ice, isn’t normal, nor is it imagined when others can feel it too. Adam has frequently been all to aware of just how cold I can get, I have lost count of the number of times that I have just touched him and he has shot away from me as my hand was so cold. It is normal in winter for him to be sat there just in his boxer shorts, I am sat beside him on the same settee fully dressed and wrapped in a blanket, but still so cold that he doesn’t want to be anywhere near me. Our bodies don’t come with a convent temperature dial, mine doesn’t even seem to have an internal one any longer, like so many things with this illness, logic doesn’t have any baring on reality in anyway what so ever.
Please read my blog from 2 years ago today – 2/12/12 – Rebuilding the cocoon
Friday seems to have taken a lot out of me, it is always the knock on that is more the issue than how I feel at the time. MS seems to let you cope, then kick you repeatably for even having tried to. I suppose it will all take a few days to settle, my routine didn’t exist last week and there were quite simply too many……