On the move again

Waking in the middle of the night, being desperate to head for the loo, is nothing new or surprising. What happened a couple of hours later, most definitely was. I had slipped back into a deep sleep, listening to Adam gently snoring, muffled just enough by my earplugs, so I could find sleep. Suddenly, I was wide awake. That gently muffled sound of contentment, had turned into an avalanche of wild boars on heat. I was sure that being awake, was surely not unique, to just our flat. It was so loud that I was convinced, that there wasn’t a single person within a mile, who couldn’t hear him. I did something I rarely ever do, I swung my left arm in the air, and let it thud down on his chest. He too, was now awake. As he jumped out of bed, grabbing his phone as he went, I realised he thought I was waking him to go to work. It took me a couple of minutes to convince him to return to bed, he kept offering to sleep the last part of the night in the living room, but gradually, he accepted, that I really did want him to return to bed. At first, I thought that the night was settling back into normality, proved by the sound from beside me. Somehow it seemed a little louder than earlier and I decided that it would be a good idea, to change my earplugs, in a hope, that a different pair might just do the trick, of producing silence. As I tried to pick one up, I instantly knew something was wrong. My center finger and my ring finger were telling me that I was holding one, but I could feel nothing, at all, from my index finger and thumb. At first, I was sure if it was simply because I wasn’t totally awake, or the way I was lying trying to stretch over the unit beside me. The more I checked my hand, I more sure I became that there was no feeling what so ever, in either finger. Both the upper, lower and side surfaces, appeared totally dead. I could move them, I just couldn’t feel them.

When you make a discovery of that sort, there is one thing that is for sure, you’re not going to go back to sleep. It wasn’t quite 7 am, so my plans of starting a new week, at a new time, had worked, it was just the wrong time. I was so confused that I didn’t even bother to get dressed, I just wanted to be up, in the light and able to work out, what on earth had happened. Both my hands seemed to be operating as normal, I managed with ease to slip my dressing gown on, and to get in my wheelchair, but as soon as I tried to move it, I knew the problem was worse than I thought. Part of my hand was returning the correct signals, but with memories of having my left hand once mangled by my brakes on the chair years ago, I moved very gingerly out of the room. Even the areas where there was some sensation, what I was feeling was somehow wrong, muffled and awkward, even somewhat lacking in the strength I expected. In my head, was a million different things running around, from some sort of odd circulation problem to permanently dead nerves, and a hand in the midst of joining them. Imagination, at that time of the morning, is a dangerous tool to possess, mine was working on all cylinders.

Once I was sat safely here, I found the only sharp thing that I could see, a pair of metal tweezers, with perfectly pointed tips. I don’t suppose it was exactly scientific, but I quickly discovered that my hand was working perfectly normally, it was only the sensations that were totally screwed up. The two worst fingers felt nothing, even when I jabbed just short of breaking the skin, I felt nothing. The rest of my hand, well it varied from the same, to normal and loads of varying shades in between. Now that I was calm and thinking straight, I realised that it wasn’t just the one hand, there were patches on my left hand as well, but just patches. My right leg, just as it has been for the last month, was also playing up, my knee, right-hand side of my shin and almost my entire foot, felt numb, but numbly passed the tweezer test. This is the most screwed up, that my sensations have been yet. I had this hope that if I just got on with life, that it would slowly return, defrost if you like, not that it was cold. Being a touch typist, meant that I could still type, but it’s odd when you can see letters appearing, without any signals coming back, to say a key had even been touched. By the time Adam appeared as his alarm had sounded, nothing had changed, but try explaining all this to someone, who doesn’t really want to be awake, and has already decided, I got up, because of him. By the time he left for work, he understood, but I still didn’t.

I couldn’t help myself from constantly checking every few minutes, I kept reaching for the tweezers, despite telling myself that I should leave it alone and just get on with things. As the hours have ticked past, there has been some improvement, but my hand, along with the rest of me, still aren’t right. I don’t think there is a single part of me, that hasn’t thrown some nutty sensation that shouldn’t be there, or isn’t disguising the ones that should. It’s been over a month now, from the first mild periods of numbness and my odd sensations seem, to be just getting worse, not better. I don’t honestly know what to trust or not anymore. Two days to Christmas and a body that is happily throwing a wobbly. What is it with me and Christmas? At one point, it felt as though I spent part of every Christmas either in the hospital as a patient, or visiting it for part of it, to be patched up and sent on my way. Before anyone thinks it, only once, was it due to an accident, and even that one didn’t involve alcohol. It’s as though my body sees this as the best time possible, to come up with something odd to upset me, and worry others. Just a week ago, I thought it this had all settled, that it had reached a plateau and that, yes, I was going to have to learn to live with intense and annoying spells of numbness, but that could be done, I just had to find a way of making life, in general, easier. I was so sure that it had settled, that it wasn’t going to get any worse, that I started analysing everything, looking for the points where I struggled, and for what could be done to change it. Top of that list as you know, was the growing and grinding eternal feeling of tiredness, if anything is going to pull you down, that will. Yesterday, I felt good, so positive about the fact that I had done the right thing and accepted what was happening to me. I was taking all the right steps to deal with the feeling that life was getting too difficult, and to possibly, even in time heal  a little. I was doing what I felt would deal with life as it was, not, for it to suddenly get worse and make life even harder.  Then in the middle of the night, it strikes again, picking up the pace. I know, that I am still making the right move, more sleep, more rest, more time to work on just being me. I’m not on a plateau, not yet anyway, all I can do is work on doing what is right for it, then maybe, it might just give me a rest too.

Please read my blog from 2 years ago today – 22/12/2013 – Nothing can kill happiness

Well, that’s my high point of the weekend over for another year,”Strictly Come Dancing” is finished, I suppose I do still have the possibility that the new “Dr Who” will be as good as the previous ones, but I have…..






Taking that step

I woke really early this morning, I mean really early, 3:15 am. For over a year, I have slept with both earplugs and an eye mask. For the first time in ages, they both failed me. I don’t know what time Adam came to bed last night, but I do know, something woke me and once awake, the urge to go to the toilet was overpowering. The plan was, go to the loo, have a cigarette and back to sleep, but like too many apparently good systems, I hadn’t factored in one rather large element, Adam. I did try to go back to sleep, for a full hour, but it was useless, my earplugs just weren’t strong enough to block out his snoring. Most of the time it isn’t a problem, but today, he was on a roll and determined to continue. Trust me, there is only so much you can take of anything, without just giving up. So here I am, not quite six in the morning and I am once more at my PC. To be fair, the last 20 minutes or so was spent running through the last year of my childhood that I spent in my Father’s home. I don’t have the slightest idea what triggered it, but the memories were there as big and as horrid, as ever. I suspect that we all have memories that we wish we didn’t. Ones that just like mine, choose their time carefully as to when they will appear, which always seems to be at a time, that no matter how intensely you work on changing the subject, how hard you try to relax back into the world of sleep, you simply can’t block them. How I landed up back in Aberdeen in that horrid little house that he rented until their divorce was through, I don’t honestly know. My last conscious thought, one that I chose rather than just appeared, was very different.

Last night, just as I had settled myself into my wheelchair so I could go to bed, I was overcome by a very odd, and somewhat disturbing feeling, that I have now had several times. I honestly can’t remember when I first felt it, several months ago, that is for certain. I haven’t written about it before, because of that disturbing element. It makes it so hard to describe, and means that on the odd occasion I have thought of putting it in here before, really put me off, but this time, I am going to try. The first time I felt it, it was centered on just one limb, but since then, it has varied between either one limb, right up to almost my entire body. No matter where or what it effects, it always appears suddenly, and always in what I would describe, as a wave that travels through me. Where ever it is, that wave as it travels, seems to strip the strength out of me. It is a little like someone has opened a plug at the lowest point and everything is, draining away, strength, sensations and even the feeling of life. Although it feels that way, I can still function, just in a diminished fashion. Last night as I said, I had just made it into my wheelchair when it hit, so clearly, I was going somewhere and I still had to get there.

I was at the far end of the living room, and despite what almost felt like a command to curl up on one side, I had to move. I was sat there, with my legs just hanging under the chair, still gently moving from the momentum, of releasing them from taking my weight, and I was perfectly content to just leave them there. Luckily, neither of them were needed, but I did need both arms, especially as my first move, was to turn myself through 45 degrees. My left arm just didn’t feel as though it had the strength, what it really wanted to do, was to pull itself up, so that it was tucked across the front of me, and to then let the hand fall limp. As I said, this is odd, as I don’t even know, how I knew that that was where it wanted to be. It was somewhat like a memory, a muscle memory if that makes sense. I needed it, to hang more downwards and to take the strain of turning the chair. It obeyed without a problem, but the turning process was slow and laboured, nothing like my normal smooth twist. The next move was the easy one, a straight push of about 16 feet, but it too was at a pace that was just laughable. With each push, I could still feel my limp legs swinging under the chair, like two much fater, but equally limp, pieces of spaghetti. Another 45 degrees, four limp pushes, another 45 degrees and two pushes out into the hall. It took about three times longer than normal and my entire body, even my mind, felt fuzzy and quite simply wrong. At the end of every push, my body was still screaming at me curl up, give up, stop, you can’t do this.

If I had stopped, well, yes, Adam would have come and fetched me, but I didn’t want fetching, I was still my normal pigheaded self. The bathroom was my goal, and I was going there alone. I had brushed my teeth at 8 pm, just an hour earlier, after I had used my steroid inhaler, apparently, it can cause mouth ulcers if you don’t. I had made it, my first achievement from my short list of todo’s just to get to my bed. With the door closed behind me, I sat there in my chair, my head slumped forwards and feeling as though I had been to the North Pole and back. Not because of the temperature, but if you have ever tried pushing a wheelchair on snow, my description will be totally understandable. The wave, that took my strength, and started giving orders, also leaves me feeling somewhat numb. Now out of sight of Adam and free of his offers to help, I just sat there. I knew I had things to do, but I was going to take 30 seconds just to sit and do nothing. My purpose of being in the bathroom, other than going to the toilet, was to clean my face and add my wish serum, the one that’s supposed to make me look younger. Sat sideways onto the sink, I took a deep breath and I reach out for the medicine cabinet, I reached over the sink, opened the door and fetched the wipes. As I settled back into my chair, I was suddenly aware, that my left arm and hand were where they had been screaming to be, curled up, limp and held up in front of me, tucked safely into my chest. I didn’t remember moving it at all. My inaction, that stationary 30 seconds, had let my arm and my left leg, to go totally numb and my arm now had a mild tremor. Everything was a struggle, including standing, which of course was something I had to do. It is moments like this, that are prompting my thoughts of adding in grab bars. I don’t need them all the time, but whenever I feel that weak, I land up wishing they were there. For now, I simply brace myself, one hand on each wall and take the few steps there and back, with care. Toileted, cleansed and creamed, I headed back into the snow to join Adam in the bedroom to say goodnight.

Like all sensations, they have no logic and I would brush it aside if it weren’t for a few things. Firstly, this odd desire to pull my limbs into me, secondly, the incredible weakness that comes with it, and thirdly, the numbness that engulphs me. The first time I felt it, I will be totally honest, I thought that I was having a stroke. If that is what it is, well I am having them from once every couple of weeks, up to three times in the same week. So, unlikely. It has to be part of my PRMS, some kind of intense sensation bomb, as intense is exactly how it feels. What triggers them? I don’t have the slightest idea. Why have they suddenly started? Exactly the same answer. What I do know, although I don’t know how long ago the first one was, it feels as though they are happening more frequently. Read back over the last six months and without a doubt, it is clear that my health has been on the move for a while. As I have also learned there are generally no answers to any of these things, just a case of learning, if possible, what not to do and what to do, when they hit. Now that I have done the most important thing, admitted to myself that something is happening, I hopefully will stand a chance of at least putting my mind at rest about them, if nothing else.


Please read my blog from 2 years ago today – 23/11/2013 – Colour past and future

Much to my surprise I managed to dye my hair without covering myself and the entire kitchen in purple dye. In fact it was really easy due to the fact I hadn’t dyed it for so long, there was nearly 2 inches of…..

It’s all change and all wrong

I woke in the middle of the night this time, not because of any dream, no this time it was fear that woke me. It is no secret that I have huge issues with my bowels or that last Friday night was not the greatest night, I was up several times and as I always go the loo when I am awake at night, too many occasions of going back to bed then having to get up again, so when I woke I had no desire to go to the loo and I headed off to just start my day. At around 11 am, just before I went to wake Adam I went for a pee, to my shock when I dried myself I found far more than just liquid, I didn’t have the slightest idea how or when I had soiled myself, but I had. In the last couple of years, I have gone through spells of mild incontinence but it has always been identical, I am totally unaware anything is that low in my system, but the second it touches my skin, by clenching my buttocks I can make it to the loo without any further issues. Saturday morning was totally different, not loose and I felt nothing, I hadn’t even passed any wind, not the slightest thing, I couldn’t even be sure when it happened. It could have been anytime from my last visit to the loo during the night, or while I was in the bathroom. It was that realization that prompted a horrid picture in my mind, that it had happened while I was asleep, I knew it couldn’t have been that bad as there was no smearing or anything like it, but I just couldn’t be sure. Somehow I had to get Adam out of bed and check that there was nothing more left behind me on the sheets, to my relief everything was clear. Nothing more happened that day so I put it down as some odd one off and nothing to give another thought too.

Sunday afternoon it happened again and again there was nothing at all that I had felt, not wind, not movement not anything. Then again on Monday, just after my lunch and all of them exactly the same and around the same amount. I have been taking all the drugs that are supposed to help me control my bowels, but I still haven’t had any luck in getting them to move, despite taking the stronger laxative for three nights in a row. Last night after finding yet another accident just before Adam came home, I had no choice other than to take it again last night, I woke in the middle of the night, luckily not making a mess of myself, but because I had the worst wind in history and it was leaving with force. I had taken the higher dose last night reluctantly as every time I have it has caused me great pain, I felt kind of trapped into it as what else could I do. With my bowels refusing to clear yet leaking small amounts which I can only guess were appearing very slowly rather than in one movement, the only way that I could see to stop the accidents was to force them to clear. For some reason, the pain didn’t appear and the expected wind was double anything I have had in the past, even though I was sound asleep, the second I woke I knew what had woken me, I honestly thought that I had messed myself badly. As I woke more wind escaped me and I knew then that I wasn’t feeling it internally at all and it wasn’t until it touched my thigh that I felt anything. My fears were misplaced, but the damage of waking me had been done, so once again I was sat in the kitchen having tried yet again without luck to clear what wasn’t either low enough down in my system to get rid of or that my muscles were totally unable to shift. I sat there for about another ten minutes trying once again work out what I could do about the whole thing as the way my stomach felt at that second, nothing was happening. I couldn’t feel any internal movement, no pain, no spasms, nothing internal at all that could possibly mean that anytime soon I would be going. I did consider taking another dose at that point, after all it was only just gone midnight, but I thought better of it, fear of causing myself pain is a very sobering thing and no matter how desperate I am, I still try to avoid it whenever possible.

This morning, well I have moved another small amount and the wind that had me out of bed and as close to dashing to the loo last night, has totally gone. What hasn’t gone is the pain in my diaphragm, the internal pressure is still pushing on it and I am once again at a loss as to what to do, I don’t want to take the boosters as I explained yesterday and I really don’t want to run the risk of another disturbed night because of what that does to my health in general. It is now four full months since I have managed to go to the loo without drastic measure, four months of pain in both my diaphragm and my stomach, four months of disturbed nights and four months in which to become totally fed up with the whole thing. I just wonder how those doctors at the hospital where I am still waiting to go would like to live the life I have done for the past four months?

I know there are a still a lot of hours until I am at the point of having to decide just what to do and what meds to take tonight, a lot of time where something just might happen, but I know my body rather well and if I don’t go again within the next three hours, I won’t. Clearly the nerves in my intestine aren’t getting any better, they seem totally incapable now of just doing what they were made for. In January, the problem started with those huge lumps I couldn’t pass, lumps caused as it was compacting throughout me, then I eventually after a month of talking to my doctor I was prescribed meds that would soften my stools and for a short while there was an improvement. Now, they seemed to have become much worse, they can’t even shift what is soft and should pass without issue, but nothing is happening the way it should. The pain the other night, well that was caused by all this, just as it was back in January and February. March wasn’t too bad, yes pain, but I could at least once a week clear my insides, now I can’t even do that taking the highest dose of laxatives which just two months ago had me running to the loo several times a day and often into the next day. Once more my insides are at a stand still and the last few days are yet more proof of dead nerves, nerves that aren’t responding to anything even things that should have an instant impact on my brain. Friday was the last time that I felt pain in my stomach, since then the all the pain has been in diaphragm, that alone is not right, I know I should be feeling pain as almost nothing has changed since then, yet all I feel is this never-ending pressure. It is that black and white, one day in agony all over the place, the next nothing. Something has really changed and I can’t say I like it, at least when you feel pain, you know it’s alive.

Read my blog from 2 years ago today – 29/04/13 – Accidents happen

I had an accident on Saturday afternoon the has left me still slightly surprised that it happened, yes there was a large spoonful of stupidity in there and it could have happened to anyone, but it happened to me. I’m a lifelong smoker and I have used a zippo lighter throughout the majority of those years, so I know all too well how to fill and use one safely. So the fact that I filled it and then nearly set the house on fire, still leaves me…….

A flavour of life

Yesterday from the minute I woke until I went to bed, I was listening to wind so strong that some gusts sounded like thunder as it rumbled around the outside of the house. As always when you live in the middle of a huge built up area you don’t see or hear the worst of any storm, for that you need to be out on the coast or worse still, stuck up a mountain somewhere. Hear in the UK though we are really lucky, no matter how bad we think our weather is, compared to what I see from around the world on TV, we don’t really have bad weather at all. To loose the odd tree, or for some homes to be flooded, is nothing compared to the thousands who die each year from hurricanes and tornadoes. Clearly being in my 50’s means I have seen a lot of bad weather, but despite what everyone says about Global warming, the worst storm I have ever see was in Aberdeen when I was in my teens and that was what I call a real storm. Wind that didn’t stop, rain falling so hard that it flooded everywhere as the drains just couldn’t cope and lightening one flash after another without a break of more than a minute or so, I know I counted them all as I watched with my nose pressed on the window in awe, it was amazing. Getting to school the next day was a case of crossing the road every 100 yards, just to get past all the debris from trees, gardens, houses and so on, nothing I have lived through has measured up to it, nor has the quantity of snow I saw a few years before, or the summer of ’76 when temperature were in the 60’s over night. Glasgow on the other hand, where I have now lived nearly twice as long, doesn’t have weather, just grey drizzle interrupted occasionally by the sun.

For the last few weeks I have been having pain in the left side of my neck, across my shoulder and down into my arm, it’s been driving me nuts almost everyday, not just because of the lightening strike pain, but because the whole arm is feeling more and more sluggish. After loosing my arm from my elbow downwards several years ago I have become used to the mad things that that arm now does, as I said to Adam on Tuesday when he caught me clearly in pain, I have given up trying to work out what that arm is doing. This morning though it is heavier and more useless feeling than I have become used to recently. The only place it feels right, is when I just drop it and let it hang doing nothing and I tilt my head as far as I can to my right side, stretching everything in my neck and shoulder, then it starts to feel at peace. I have still find it odd how my body seems to tell me what it wants me to do, even when often it is counter intuitive, if I follow my instincts I normally find the relief I am looking for. Clearly though just sitting here with my arm hanging lose and my head on it’s side doesn’t exactly make typing or anything else easy, mind you it is far more sensible than some of the positions I have found myself in over the years.

Today really isn’t my best one as on top of that I am also fighting with nausea again, breakfast was a half done dish, I couldn’t take even one more mouthful as I was sure that if I did, I would have lost my meds that I had only taken 15 minutes before. As always, regardless what is causing that feeling of wanting to throw-up it always goes hand in hand with temperature spikes, so my dressing gown has been on and off several times. It is clear already that today is going to be filled with irritations not drama, strangely I think I prefer drama as at least you know that that settles and life goes on, all these small irritations really drive you to distraction, no sooner have you fixed one thing and another appears. If I were to start at my toes and work my way upwards, well I could make one of those huge and pointless lists, that as the day just grows and grows and grows, pointless as there are no true fixes to any of it.

I hadn’t really thought about it until today, but my PRMS has really moved it’s focus to the upper half of my body in the last year. It used to be my legs that were the thing that plagued me with pain and spasms, now I think that that might well could be put down to the fact they don’t like being walked on. I first noticed a great improvement when I got my wheelchair, it was one of the reasons that I fell in love with it within having it for just a day, the difference was so striking. What I hadn’t really picked up on, is the fact that my now reduced movement in the house, has also reduced the pain levels again. I know it isn’t just the hugely improved pain control medication that I now have, as the difference I feel in my legs isn’t in line with the rest of me. The only explanation is the fact I hardly actually stand any longer. Nothing makes a difference to the spasms, they still happen as they always have, but that is where the pain control has made a difference. Not so much to the sharp one, but the spasms that grip and don’t want to let go and often last between 10 or 15 minutes at there worst, well that is one area that good pain control makes a difference. For some reason the improvement I have had in my legs, has more than been replaced by what is happening higher up, it is almost as though it knows it has lost one battle, so it has gone to work on another. My COPD was just the start, along with everything going wrong with my guts, both have been causing more and more issues in the last few months, as is clear by my posts. I don’t manage to get through an hour, far less a day without long spells of pain in places I never had the slightest issue with a few years ago and it appears that new pains and sensations are appearing weekly. All this week I have had a new problem with eating, I have suddenly started to get strange sensations in my mouth when ever I put food in it. To be honest, I don’t think it is helping much with the feeling of nausea as if everything in your mouth feels wrong, your instinct is to get rid of it, not swallow, but I have to swallow or I wouldn’t eat. I suppose that it is clearly possible that the nerves in your mouth can be affected just like any other nerve can, but I wish it would get bored and move on to something else. This morning when I took a mouthful of porridge, my hard and soft pallet started to tingle and spark, as though I had something distasteful in my mouth, the actual flavour was normal at first, but I was getting signals that it was quite simply harmful and the more I ate the more it began to feel as though the texture was off, yet it was perfect at the start. By the time I had made it about half way through the actual flavour started to change, it’s hard to explain other than to say it wasn’t right, not like it had become tainted by something, more as though part of the taste was missing. I noticed the same thing yesterday at lunchtime, what I was eating just wasn’t right, the base flavours are right, but the more subtle flavours that make it something we really want to eat, had gone, far worse than just bland.

The more damage my PRMS is doing to the myelin sheath around my nerves and my brain, clearly the more damage will be done, it’s just scary when you don’t know what will be next, in some ways from what I have read, it is like having a stroke in slow motion. Bit by bit I am disappearing not yet as a person, but clearly as a working body. Like I said yesterday, I though MS was pain and wheelchairs, if only that was all it was, it appears that the truth of MS is that it is anything it chooses to be and does what ever it wants. If there is a nerve, there is a way it can destroy or distort what it does, in other words, there isn’t a single millimetre of our bodies that it can’t do something to and I will continue writing about ever single bit of it.

Read my blog from 2 years ago today – 11/12/12 – Control 

We seem to have plunged into the middle of winter, it was minus seven last night and I have no problem believing that the house is freezing. Again this morning I was feeling terrible when I woke up, but I think I have the reason why every morning lately had been a bad start, I think it has to do with………..

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……