Something’s, just make you smile

I shouldn’t have done it, but I did. When you start to feel desperate, we all think about things we shouldn’t do, but I knew inside, it was the only answer. Somehow, I had to reset my system, force my body to do what it’s supposed to, rather than running mad, as it has been the last few days. I remembered several months ago now, that I was at my wits end with the pain I was in, so I took the desperate measure of taking a double dose of my Morphine booster. I had gone to sleep scared, as I didn’t know if I had taken a dangerous dose or if I was going to be OK, I slept the whole night and woke with my pain much reduced. I never once thought that it was the Morphine that made the difference, just the fact, that I had had a really good sleep. Last night, I didn’t take a double dose, I took a dose and a half. Snapping the tablet was easy enough, swallowing it, not so easy, as the sharp edge kept catching on my throat, but on my third attempt it went down. All I was looking for, was for my body to slip into a deep sleep, and stay there. If I could bypass the fight to get to sleep, then go into a deep enough sleep, there was just a chance that when I woke, I might find the improvement I have been longing for. I lay there for a while, still feeling all the sensations, the insects crawling over my legs, the fire and numbness of my feet. Just as it has been for the last few days there wasn’t an inch that I could find, where silence was actually known or remembered. Everything that had been there for the entire last 36 hours, without a seconds break. I lay there, waiting, hoping and even slightly praying because I had quite simply had enough.

Adam had questioned me during the day, over why I hadn’t gone to bed in the afternoon. I told him the truth, I didn’t want to sleep, I was going to listen to my body and just do what it wants. What I didn’t tell him, was that total truth of why, I didn’t want to lie down. I didn’t want to be in bed just lying there feeling once again all the things that had kept me awake the day before. I had already hatched my plan, I was going to keep myself awake until 9 pm, then take my extra meds and sleep then. Sitting here, I was still able to blank the bulk of it out, I could use distraction to it’s fullest, not a total success, but enough for me to ignore all but the worst. When I woke just before 7 am this morning, I feared that it hadn’t worked. I was pain once again in my lower back and I was desperate to go to the loo, as for the rest of me, well my bladder and back, were screaming so loud, I felt nothing else at first. 7 am, there was an hour and a half before the alarm was due to sound. I wasn’t really tired, but I knew that I could still sleep and that hour and a half, could just make all the difference. I sat in the Kitchen for a few minutes, just smoking my cigarette and working my way around me, searching to see what I could find. What I found made me smile. There was pain, there is always pain, but there was also silence, beautiful silence. I had stepped back in time, between the what I now consider my resident oddities, there was nothing, normality, skin that was just skin, rather than a mess of messages that just didn’t belong. The first of my goals had been achieved, all I had to do next, was to lie down.

I have to admit, that I was hesitant, part of me said just stay up, accept what you have and have a good day. An hour and a half, though, is a long time when it comes to being relaxed and rested. I had to give it a go. Climbing back into bed, was as hard as it was to get out. I don’t know what has upset my back, but it is determined to produce pain in the morning. I know it’s not the mattress, we only replaced that a few months ago. I had hoped that it was just part of all these heightened sensations and although this morning, it didn’t hurt as badly as the past two days, it still hurt. I had also been playing with the idea, that I have been spending my nights, reacting to what I could feel, even in my sleep and I was somehow twisting my spine, but I couldn’t be sure. Once lain down, I found the perfect spot where the pain almost vanished, then I waited. At first, there was silence, everywhere but my back and my hands and arms. The wheelchair had done it’s normal, but the rest of me was totally silent. I lay there still smiling into the darkness, no rainbows of light, just darkness, and silence. Yes, there was a growing numbness in my legs, but it was just my legs, not my face or anywhere else. I smiled my way back into sleep.

The smile didn’t even vanish when I did get up to find Adam still asleep and not on his way to work. My fears of my new getting up hour had happened, he had slept on and was by the time I got up, late for work. Even that didn’t upset me, it’s funny how something as simple as sleeping deeply and my body shutting up, has made me feel so good. It’s three hours on, over those hours many areas of displaced sensations have returned, I don’t know what will happen when I next lie down, right now, I don’t really care, as I slept and I’m smiling.

Please read my blog from 2 years ago today – 30/12/2013 – So where am I

There was no catching up for me yesterday, I knew before I went to bed for my nap that I was already a couple of hours behind, no matter what I tried the time just kept slipping away. I am already over an hour……




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…..






Who knows

I don’t know what has been up with me this week. I feel as though I am struggling, but why, or even, what specifically is making me feel that way, I’m not sure. It’s not as though anything that has happened, or any of the symptoms that I have been battling with, haven’t existed before. Yes, there has been a lot of times where I have felt buried beneath a mountain of them, but even that isn’t really new. For some reason that I can’t actually work out, I am struggling. I hate it when I can’t put a smile on my face that feels totally real. I hate having to put one on there, that feels even slightly fixed, but I have to. I know full well, that no one’s standing over me, telling me I’m a misery guts and to get my act together, other than me, but we are our hardest critics. I am the only person on this planet, who is pushing me to be happy, that’s stopping me from falling into bed and not just staying there, something I think I could do with ease. I don’t think, there has been one single evening, when Adam hasn’t double and triple checked, that I’m OK because, he knows full well, I’m not, and I’m just putting a face on. Just as there hasn’t been a single morning, where he hasn’t left me for work, without giving me one of his quizzical looks. I don’t answer his word or his looks with total truth because I don’t actually know what it is. Everything, just feels wrong, and what does that actually mean?

I know that this damned numbness is getting to me, but that isn’t enough, to make me feel or act the way I have been. Yes, I would dearly love to know exactly where my lower limbs are, rather than just this dead heaviness hanging below my knees, and to not dread sitting still for a second as the numbness will spread and grow, but numbness isn’t enough to make me fell overwhelmed. Nor is the pain that has snuck into its core and is at this second is living wrapped around my bones. It feels like the trigger as it is from the pain, the numbness emerges and spread in every direction. Yes, I have found the start point, it took me time to work it out as pain is just a normality, not an oddity. What starts the pain, well that’s still a mystery, to work that one out, would mean working out what causes PRMS. My hands now feel so swollen that even the fact that my rings are still spinning in circles is getting really annoying. I have lost count the number of times I have fixed them in the past hour, then found myself staring at what should be fat fingers in disbelief. Clearly my sensory system is working overdrive as if it isn’t numb, it is telling me it’s itchy or cold or worse still on fire. Every part of me is alive in some way or another that no one, other than me, would accept as normal.

Every morning this week has been the same, as it along with the last hour of every day, has been the time when I have felt most keenly that life is getting tough. I do everything that I can to do all that I need to, if not in tightly timed pockets as I once did, at least within a reasonable scale to the rest of the day. There hasn’t been one morning this week where that has been achieved, not one. Somehow, the hours have flown and as suddenly as my day started with the alarm, the hour of 1 pm, has arrived. Six hours were I don’t feel as though I have stopped for a second have passed and every day, I am behind, not finished and happily fetching my lunch. Yesterday, it took me right through to three o’clock, two whole hours, that I have no idea where they have gone. I know without a doubt, that I am typing slower as the pain in my hands has been a hindrance. I also know that my concentration has been thin and I frequently seem to be staring into space, but, is that all enough, I don’t think so.

My intestine has been tight and pressing into my diaphragm every day this week, and every day, which is far from normal, I have actually moved my bowels. I did increase the dose of Psyllium that is in each of my pancakes, as I had let it slip to so little, that it was having almost no effect. I know it always takes me a few days to settle to any change in dose, so the pain increase and the pressure increase is around what I expected. The odd bit is, this dose is exactly the amount that I took before and actually caused an improvement from the day I started on it, but I suppose this is my body and not having the same effect, isn’t that surprising. I know when our internal bodies are upset, that it can have a huge impact on everything else, but for some reason, I don’t believe this would cause this feeling of struggling all the time.

I am not the kind of person who would normally huff and puff at having to do anything, but I feel as though almost every action has a prelude of maybe not an audible one, but at least an internal one. Everything from taking a drink, to having to go to the loo, is just too much effort. It’s not as though I have lost my enthusiasm for life, that is still very much here, this is a physical. Every action requires energy and it’s that energy that is missing, not the one that want to do it, but the one that has to do it. I know that this sounds somewhat iffy, but it is almost as though all these newly heightened and extensive sensations are draining the energy I have. Is it possible that nerve activity can make you tired? I know they can psychologically affect us, but can they also physically use up energy? Is it possible, that the fact my legs are numb right now, that that very numbness takes energy to create it, rather than just as I thought just a mixed us signal? Feeling worn down, is very different from feeling as though you have nothing left to give. I don’t feel as though I have the energy to get through today, I will, but it will be a series of struggled through hours, rather than a day.

What our bodies do to us is a mystery to even our doctors, I am totally sure if I were to place this in front of my Dr and say, “what do you think?” the answer would be, “It’s possible”. If there is one thing that they say more than anything else to me, it is “It’s possible”, what kind of an answer is that? I know what kind of an answer it is, it’s non-committal. It’s like everything else they say about PRMS, “Who knows?” it’s as sure as anything, they don’t. If there is one thing about this illness that annoys me more than anything else, it is all these unknown factors. I know for a fact, that I am in a tiny group, just 5% of MS sufferers. I also know for a fact, that not once have I been asked to trial any drug to see if it helps or not. All I have been told throughout is that this, or that new drug, won’t work for me. How many PRMS patients have they tried it on? Where have they found enough of us, to be sure? In the now nearly 4 years of being on Twitter, I have only found 3 others. Thousands with MS, but only 3 with PRMS, I just can’t see where they are all hiding. To me, before you can cure something, you have to know everything about that condition as there is to know. If there is a single question that they have to answer with “It’s possible”, then they don’t know enough. It doesn’t matter what you own chronic condition is, but if your specialist has to answer just once, “It’s possible”, then question everything. To be fair, I doubt there is a single condition out there, where that phrase isn’t used at least once to every patient. But that kind of confirms my conclusions, unless every single one of us, are part of any ongoing research, their research is flawed.

I believe, that almost every single one of us has been more than a little frustrated, by the fact that no one knows what causes our conditions and that there is no cure. In time, you see past that point and accept that it is just the way it is. To be honest, I got past that point with ease as what annoyed and frustrated me, was that no one could even give me a forecast of what my future would be. I still find it hard that they don’t know even from my current condition what will happen next. That to me just isn’t right. Being told that your condition is unpredictable, is frustrating enough, but add in that they can’t even give you a complete list of possible symptoms, that is agreed upon, is beyond a joke. I honestly believe that I know more, about PRMS than, every single one of the doctors I have ever seen. For a lot of us, it has become a case of not out doctors healing us, or even helping us, we have to do it all ourselves, which makes a total joke out of the medical profession. Don’t get me wrong, I have had some wonderful help and care over the years. But when it comes to my MS, other than eventually getting my pain under control, and tinkering around the edges. It has been a case of a diagnosis, followed by little else.

So once more I am faced with a pile of questions and no one to help me find the answers. As today, I am inside struggling just as I have been all week. There is still a smile on my face, but inside, I just want to give up, disappear into my bed and sleep until next week. That way, I might actually feel awake for more than half an hour.

Please read my blog from 2 years ago today – 05/12/2013 – Giving in is good 

I guess we all like to think that our lives are in our control, at least I always thought mine was but now I have at last admitted to myself that I am have absolutely no control left over mine. I know that sounds…..

Finding my feet

Last night, has to have been one of the strangest evenings I have spent in a very long time. Most strange evenings usually occur because of other people, this one was down totally to me, or should I say my body. There is without a doubt, something major going on with my nervous system. I have noticed over the last few weeks that different area’s of my body, normally at different times, have been going numb. That’s numb as a sensation, not as a total loss of all feeling. It is without a doubt the sensation disruption that I have always suffered from more than any other, but lately, well it’s been all over the place. Sometimes it has been just a small area, like half the back of my hand, on others, it has been an entire foot or the entire side of my head. Normally, it is one area at a time, occasionally, a couple, but last night took the biscuit.

To be fair, it actually started about two weeks ago, gradually building, intensifying and spreading. Over the last few days, I have been getting spells of up to a couple of hours where numbness has taken over most commonly my lower legs. Usually, it has been one or the other, but I have had a couple of occasions when I have lost both feet, but only up to my ankles. Other times and probably the next most frequent is the upper side of my knee when I am sitting. For a while, I thought I was causing that, as I do have a bad habit of leaning forward when watching TV, and pushing my elbows into them, but it didn’t explain it at other times. It was my legs that started playing up yesterday first. I think I was still sitting here writing when I was first aware that my entire right foot was numb, by lunchtime, it was creeping up my lower leg. Which was about the time that my left foot joined in and did so suddenly, totally mirroring the other one. This sort of numbness is odd, firstly, because, for some reason, it makes the area it is in feel as though it is swollen or enlarged both inside and out. If it appears at a point where there is flex in your body, it makes using that flex difficult. For example, we all know what it is like to have a bandage around our ankle, just as it restricts movement in any direction, well this numbness does as well. I have tried to work out how it does that, as it’s not as though the area’s affected are swollen or anything, but that’s how it feels whenever I move, which is odd, very odd. When I woke up after my nap, well it had spread in my sleep, my arms had taken the rest time as a signal that this being numb was a great wheeze.

Having lost my left hand in the past, anytime it starts playing games, is worrying, I simply can’t help it. You might think that the fact you are right handed, losing your left hand wouldn’t really matter that much, trust me it does, you use it far more than you will ever know unless you too lose it. Waking to find that my hand felt pretty much as it did about seven months into its healing process, was clearly going to be upsetting. I didn’t notice anything going wrong last time other than a some weakness, then it totally went, but that doesn’t mean, there was nothing to notice. I woke to find that I couldn’t make a proper fist and the numbness was marked, just as it was in both my feet. While I was asleep, my diaphragm had tightened considerably, as had the intestine right across the top of my stomach. When they both go like that, it’s not only harder to breath, it is incredibly uncomfortable to sit. Sleep had made things worse not better.

My body was disappearing bit by bit. By 6 pm when Adam came home, the numbness in my lower legs had spread upwards to within 4 inches of my knees and there was a strange growing cold spot on my back. It felt as though someone was circling a couple of ice cubes round and round over the exact same vertebra. I didn’t mention it to Adam as I know without a doubt, he would have just spent the entire evening asking how I was, and worrying. If there is a pointless act, that is it. As the evening progress, so did the feeling that I was losing my body, there is no other way of describing it, I was losing my entire body and there was nothing I could do. In the past, all that was needed was movement and it normally went away, until I stopped again, it gradually returned. Any movement at all had been like a reset button up to date. No matter how long it had taken for a sensation to build, it took exactly the same time after reset. Yesterday, that wasn’t working. At it’s best movement did disrupt it, but as soon as I stayed still again, it instantly returned to where it had been, no build up, just a total return. I could have danced a jig and it would have changed nothing. By bedtime, that odd cold spot, well it had grown to a rectangle that reached each armpit and was about six inches tall and the right side of my head was numb as well. My breathing was tight, even using my nebuliser didn’t help, it was quite simply a case of the longer I was awake the more that seemed to be going wrong. I was nauseous, tired and I had quite simply had more than enough for one day. I went to bed in the hope that waking this morning would be the rest I was looking for.

It wasn’t. Yes, things are better, but a total reset, no such luck. The intensity of last night has gone, but everywhere that I had numbness, I still have numbness. Everywhere that I had pain, I still have pain and my breathing, well, it’s better but not at it’s best. Worst of all, I don’t feel as though I slept for a second, but I did, as the first thing I heard was the alarm, no night-time trips to the loo or the kitchen, just what should have been perfect restful restoring sleep, but it failed. Last night, I remember sitting on the settee making a decision, one that I can’t remember the thinking, only the conclusion. I was going to phone the OT this morning and ask one of them to come and see me. What exactly my thinking was, totally escapes me, the only thing that makes sense of it would be to see if I could convince them, to put pressure on Westmark about a reassessment for my wheelchair. I must have been feeling more desperate than I thought, as inviting an OT into your home, can be a dangerous move. I have come to the conclusion that part of their training is to develop a “takeover” attitude. You can forget that odd idea that we all have about our homes, being ours, or that we like it just as it is, they don’t believe either of those things matter. Nor do they actually listen to our words, they only hear theirs. Clearly, I don’t and didn’t like what happened to me yesterday, but is it really bad enough to go through that? Right now, I have my doubts.

I can still manage, after all, these are sensations. Yes, they do bring a slight loss of feeling with them, but slight is a million miles for actual. Sensations aren’t required in my legs, as I am safely sat in my wheelchair. I am not going to be able to damage myself as might have been the danger if I were still walking everywhere, but I’m not. Although I can see what my thinking was, I don’t think that now is the time, not yet. There isn’t anything that can be done about sensations, they are what they are. Are they an argument for a change of wheelchair, probably not, especially, as this is the first time they have been that intense. I think that this is a case of waiting to see what happens, then talk it through with Adam before I do something as stupid as picking up the phone to an OT.

Please read my blog from 2 years ago today – 03/12/2013 – Taught to be silent

My body has been playing tricks on me again, yesterday at around 2 pm just after Adam had returned to work, I suddenly lost feeling in the entirety of my left arm. In the first few minutes I was astounded by……..

It’s not really there.

A Saturday morning and actually no snoring, well at least not in the living room Adam is actually in bed. We sort of switched places today as I got up after another 11hr night, slightly less yes but still to much. I guess it means my body needs it, otherwise I would wake early and get up, but I don’t even have any disturbance to my night, it just ends with the alarm. When I woke yesterday afternoon from my nap I went for my shower and my weekly effort of washing my hair. I only wash it once a week as unlike when I was working it isn’t filled daily with hairspray or attacked every morning with straighter or tongs depending on my mood. With nothing being done to it other than brushing it stays amazingly clean and shiny, so once a week is enough and a relief. Since I haven’t left the house I haven’t seen a hairdresser, as a result my hair is now down to my waist and actually so much easier to look after. The hardest thing is washing it as it is rather full and heavy but once washed, then tied up in a towel for 10 mins and then brushed that is it. For a long time there has been two problems with washing it though that have nothing to do with my hair. The first will be obvious, keeping my arms up long enough to do all that is required, even when sat down is tiring, nothing that can be done about that one, but it’s the second that I really don’t like. Not every time but frequently as I let the shower water run over my scalp it causes horrid sensations in my scalp. It is a little like needles being run over the skin, I have tried every setting that the shower head has but once the sensation is active, nothing stops it. A couple of years ago it happened every time I washed my hair and it really put me off doing it, now though it is just occasional.

There are many sensations like that and part of the problem with them is that they leave a shadow. To try and explain to those that don’t have this may be difficult but here goes. Say you have an itch that needs scratching, you scratch it and that would be the end of that, for me frequently I will also scratch it but for the next 10 to 20 minutes, I will feel the channels that my nails have traveled over my skin, the itch has been replaced by 4 lines that at first feel like a normal scratched area but then it changes, each line that each nail gently went over, feel as though a sharp fork has been pushed into my skin and dragged down those lines. The lines slowly spread with the sensation changing as they meet each other, growing to cover a larger space then the actually itch occupied. Shadow aren’t just caused by scratching, one that is a guaranteed to happen every time is one caused by cold. If I put the palm of my hand on to something cold like a china sink for just a few seconds, the palm remains with that cold patch way past the time it should be there, it can be there for anything up to 30 mins. Even putting my hand on something warm doesn’t remove it, those nerves have decided to be cold and that is it. I am often more aware of the shadow than what caused it, finding myself trying to work out where the cold spot or gouged lines came from is a frequent pass time, as I just don’t remember what I did for it to happen. All to often the shadow reaction doesn’t bare any resemblance to the cause, the nerve has been triggered and it has chosen a random sensation I will feel.

Every nerve I am aware of in my body seem to think that my life is some sort of game for them to play with, I accept the fact they cause pain, but many sensations are really odd and really annoying. Sitting feeling a hundred ants climbing your leg, followed by what feels like blood running down it, is just plain annoying. On occasion you can disturb it enough for it to go away, at others it remains regardless of your actions, but they are all part of what slowly wares you down over a day. Pain is something other understand with little need of an explanation, but pain is one element, yes the most clear and understandable, but the it is only one part of a huge picture. No medication seems to be able to switch of nerves that have gone off on mad journeys through their spectrum of information, none of which is real, all of which is intensely annoying.