So cold

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……


So what’s the big deal

Last weeks problem of missed medications happened again, but this time it was an absolute classic. For months now Adam has had an alarm set so that I take my meds at 8pm, ready to go to bed at 9, everything has been working fine, except last weekend when Adam switched the alarm off without saying anything, he assumed that I had heard it just as he did and that I knew what it meant. I had heard it, but as he picked the phone up and hadn’t said anything, I didn’t make the connection and just sat there enjoying the TV, luckily he realised at 8:30 that I hadn’t been anywhere. Last night we both heard it and headed to the kitchen, opened the draw where all my in use medications stay and sorted out all my tablets and took them, then returned to watch TV until bed time. I was lying in bed feeling really odd, agitated and with huge areas of mega sized pins and needles, others simply on fire, over and over again I relaxed all my muscles, only to find seconds later they were all tensed up again, making the electrical nerve pain worse than I had felt it for months, then it clicked, I had taken the tablets, but I hadn’t taken my Amitriptyline which comes in liquid form. Last week I managed to go two days without taking my Dulcoease, simply because I hadn’t switched over the empty strip for a full one, I just throw the old one out and despite looking at my pile of pills and knowing something was missing, I just couldn’t work it out. I seem to be determined at the minute to screw my meds up in anyway I can and short of Adam giving them to me, hard as he is either at work or asleep when I take the none evening doses, there isn’t a way round this one. Pill trays stopped working long ago and don’t hold liquids, which I have two of, nor do they help when you don’t change over the empty strips of tablets. This is another of the tricks that no one warns you about that any condition that affects your brain will do, your mind will seek out and find any way possible of screwing up your life up that it can. If I sat down and tried to come up with a list of reasons why drugs might fail to be taken at the right time, in the right quantity or just not taken at all, I wouldn’t come up with half the things my lesions seem to have found and every time I get control, it just finds a new way of messing around with my mental connections to make that fail as well. You never see the funny side at the time, as at the time you have just gone through pain and discomfort that wasn’t necessary, but if I couldn’t laugh at my own idiotic mind, it really would drive me mad.

Amitriptyline, especially in the liquid form, is a medication that I have always found works quite quickly, easily within 15 minutes it had reached the majority of my body, but as always and I am sure this is a spot of madness, I have to wriggle my fingers and toes for it to reach their very tips. I actually don’t think it has anything to do with getting the drug to those far flung points, what I believe is happening is quite simply is that the nerves are to busy causing havoc to listen to anything else, once moved, they reconnect to the main frame and shut up. I have noticed more and more over the years that once some part starts feeling in one set way, be it direct pain, or a sensation like frozen, it seems to have a cell memory if you like, as in that will be what I feel the most in that set space. Every part of me seems to have it’s pet favourite, yes it will have other sensations as well, but they are always short lived and habit brings it back to it’s own speciality. The only thing that makes sense of it to me is that the damage done in that area promotes those sensations, so if it is the left side of the nerve that has suffered demyelination, one thing is causes, the right another, or even down to the thickness of the sheath left.

On the surface sensation symptoms seem to sound so trivial, well what is the big deal about pins and needles, we have all had them at some point in our lives haven’t we, well that was what I thought. I had been living with what I believe now probably where heightened levels, due to my earlier form of RRMS, but when it changed to PRMS all the sensations I had convinced myself were “normal”, hadn’t really prepared me for what lay ahead. To be far it is only in the last 5 years that they started moving off the scale, not only do they last for as long as they choose to, they slowly get more and more intense, no longer the gentle tingling sensation that makes you want to shake the affected limb or stand up, what ever feels like it will work at the time, they get sharper and sharper, slowly spreading over larger areas as well. Last night all my limbs were being stabbed and gouged at, with tingling around in the back ground. Areas can start to itch for no reason, but when you scratch at it, you find you have reached for the wrong place, where you are feeling it, isn’t where it is. Your skin can burn, freeze and spark, or simply go numb. It can feel as though it is sliding off your bones, or is suddenly so tight you believe it will split and these are just the sensations that appear on your skin, that I can think of just now, there is a whole new list for what happens under it. Life is spent scratching at nothing, being in pain yet, totally numb in the same place, there is no rhyme nor reason to what happens, no triggers and no real solutions. Creams and balms do nothing, washing or rubbing even less, it is a case of what works then, not the last time, or the next, now is the puzzle, later can wait.

Last night my skin was going mad, there were spasms and lightening bolts of pain firing in every direction they could find, yet it took me 20 minutes to work out why. It wasn’t the first time I have done something like this and I know with my brain flying solo, that it won’t be the last, but you would think that I would learn and recognise, well maybe I have, it’s just I forgot. Sometimes I wish they could turn the whole lot of, just disconnect all sensation and give me peace, but clearly that can’t be done as I don’t want to lie like a vegetable for the rest of my life, no nerves, no brain, no brain, no body, no life. 20 mls of medicine, that’s all it takes to shut it up, for now, 20mls once a day, any more doesn’t work any better and it’s never totally turned off, it can’t be, so there’s no answer, just to live with it and hope that it doesn’t get any worse, or that it learns to over ride the medication, as what then, they don’t have the answer any more than they do to so much else.

Sensations, tiny little things that once brought pleasure, experience, learning and even fun, all lost, all changed, all turned into something else, something you never thought they could be. Slowly over the years, just like the location of an itch has got lost in the wiring, so have all sensations, touch isn’t what it once was. Some days what should be a gentle brush of your skin, turns itself in to fire on the surface and ice through veins. There is no longer any pleasure or joy from a lover, as their love is no longer translated in to pleasure, pain is all that remains. The spray of a strong shower, no longer feels cleansing and refreshing, now they are cutting deep into your brain, each drop shooting through you like a lightening bolt. Water has to cover as a blanket from a tap, not cascade like the rain, as when it touches you, who knows what it will be then. Some days, just occasionally it all works, some days it feels like life is still there to be felt, to be enjoyed and cherished, but feelings don’t last, sensations can only be held at bay, not fixed, rewired or corrected. For now I still remember how things where, what a soft carpet felt under my bare foot, how it was soft and cradled, not hard or jaggy, I remember every touch, every surface and when things are good I get to feel then again, it isn’t what has replaced them that hurts, what hurts is I can’t choose through mind or drugs to be free to feel what should be there, I can’t even secure a 5 minute window as like pain, sensations change second by second.


Please read my blog from 2 years ago today – 24/11/12 – Endoscopy appointment

My appointment for my endoscopy has arrived, it is on Friday are 1pm. When the envelope arrived I knew as I had an endoscopy about 8 years ago that the big packs where the horrid mix that I have to drink the night before and I thought that the booklet that arrived would simply be to tell my what would happen and when to take the gunk, I nearly put it into…..