Body dip

Posted on December 29, 2015 by livinginalimitedword

As soon as I lay down on my bed, I could see flashing lights. The last part of my body had joined in, optical neuritis was clearly playing a bigger role than I thought. I had been very aware that my eyes were just that bit more blurred than usual, and that the seasick sensation, when watching anything that moved, was growing stronger. I often feel it, so it’s nothing new, but when you can’t actually stand the effect of scrolling a page, well it’s time to give up and go to bed. I don’t know why, as other people say they can see them with their eyes open, but I only ever see lights, when I close my eyes. Once I was kitted up with eye mask and ear plugs, I lay down to find that it was brighter inside my mask, than it was outside it. Ribbons of light were flowing from top to bottom, some coloured, other were just bright. Seeing odd things when my eyes are closed isn’t unusual, in fact, it was the first signs I was aware of when my right eye was affected by, macular degeneration. The best way to describe it would be to say, it looked like a miniature petri dish filled with live cells, all wriggling and squirming, splitting and dancing, right in the center of the surface of my eye, but only when my eyes were closed, unless, I tried to concentrate on it. My vision wasn’t noticeably different at first, then the blind spots appeared. They were small, all in the exact same area as my moving friends, it was a bit like looking through a piece of lace. My peripheral vision was fine, it was just that central area, and it caused huge problems, as my right eye, had always been my good one, I am short sighted in my left one. If I were to close my left eye now, I can no longer read at all, the lacy spaces once allowed me to line up a clear area and scan with just that spot, but the clear spots have shrunk. Having optical neuritis on top, apart from triggering headaches, just makes everything harder as what is still normally good, is then blurred.

I was so tired, and felt so sick, that even though my skin was crawling with life, that once I relaxed a little and demanded to sleep, I did. An hour of rest and another of sleep, made a huge difference, actually, far more than the whole previous night did. I was a long way from perfect, but I was awake and the headache had gone. I hate headaches, they somehow have such a devastating effect, despite the fact that in the bigger picture, they’re nothing. I have always wondered how come I even feel them, when you consider how well my body is protected from pain, by the mass of tablets I swallow each day. Either, they are high on the migraine scale and I just don’t know it, or, just like burning yourself, something always gets through.

I have to admit, that yesterday I was feeling rather sorry for myself. It was one of those days where it didn’t seem to matter what I did, my body was determined to make life hard. I guess, that in reality, I was quite simply worn down by everything. It isn’t normal for me to feel that way, I am normally so good at keeping my life in perspective, just occasionally, I fail, and when I do, I fail totally. It’s nothing like falling into depression, but yes, I feel down. Even I get fed up with the whole thing, and just want to scream at the world, “This isn’t fair”. Nobody ever said it was, nor have I ever believed it is, but what life deals out to us, we just have to accept and get on with. I suppose, that I am entitled to just every now and then, feel as though I’m being picked on. Today, well I don’t feel that way at all, today, I am back in my normal stride and the fact my body doesn’t understand that when air or material touches it, that that is what it should feel, not fire, creepy crawlies or numbness, well that’s just the way it is. Not once since we redid our bathroom and removed the bath in preference for a really good shower, have I missed the bath, today I do. I suddenly had a desire to lie in warm water, I just have this feeling that warm water might neutralise the sensations. That there is a possibility, that if my body was surrounded by something it’s not used to, that it might just enjoy it, accept it and stop, feeling what isn’t there. Who knows if it would work or not, it’s just a notion. Maybe, it’s part of a desire I’ve had in the last few days to go swimming, something I used to really love, but the chances of that, are even less than a bath.

I’m not one really for dreaming about the impossible, but I remember once sitting thinking about winning the lottery. In my head, I designed my ideal home, not overly lavish or even big, I’m not that sort of person. But the one thing I wanted, even more than a house I could live in, in a wheelchair, was an indoor swimming pool. Although, I never had the opportunity to even try it, as all the swimming pools in Glasgow are miles away, or require expensive memberships, but I’ve always believed the swimming would help me. Even now, despite the fact I can do little, I know I could still swim and if, for nothing else, the exercise could change a lot. I know it’s a crazy dream, especially as I don’t do the lottery, but I guess we all need our dreams. Even though it was many years ago, I still remember it, right down to the colour of the tiles and ferns I wanted growing on one of the walls. The rest of the house, I don’t remember a single thing, just that one room. It’s odd the things we remember.

Even without a swimming pool, there are some bright points, this morning, my eyes have settled, and my vision just that bit better. My body, well, unfortunately, it’s still my body, despite the fact I would happily give it away, as my nerve endings are still on hyper mode. I just keep hoping that today, or tomorrow, or even the next day, I can say I have silence, even in the smallest part of me, that’s my only goal today, just to find one. The rest of it, it will unfold as it chooses.

Please read my blog from 2 years ago today – 29/12/2013 – Zombiefied

It’s one of those strange days, one where I know what I should be doing and I really don’t feel I have the energy or need to actually even start on any of them. I’m drained, quite simply the past week has……

Joyus

Posted on December 28, 2015 by livinginalimitedword

I have for years now, taken enormous pleasure in simply going to bed. It was the one place where my body was cocooned, which meant that the twitches and mini spasms didn’t shudder through my entire body. Even the next stage up, on the scale of spasm, seem to be reduced in their pain and their worst effects were held at bay. I have been lucky for so many years, in the fact, that sleep always appeared quickly, and I slip into a world where pain doesn’t effect me in any way similar to the day. Bed and sleep, have became my joy in everyday life. From just reading those few lines, it’s clear that something has changed, something is now intruding into my rest. In the run up to Christmas, I have written about the bizarre increase and new areas that sensations have been running wild. Yesterday was the first day, they found their way into my rest, in a way, that was somewhat disturbing. It’s normal when I get into bed that I will have some part of me, tingling or filled with pins and needles. Since I have been using my wheelchair, it is my arms, where it was once was my legs. Their upset, was clearly due to the fact that the muscles had been recently used, no awards for working that one out. It is also normal, for my diaphragm to be producing pain, and the change from vertical to horizontal, normally, triggers slowly tightening intercostal muscles. All of which, I can slowly manage with relaxation and drift into sleep, or just rest for a while if that was my goal. Yesterday, both in the afternoon and at my bedtime, lying down, didn’t dull anything, it sent my entire body into bedlam.

I have felt similar things during the day, but never quite as complete, or as intense before. My entire body, and I do mean entire, as I couldn’t find any part of me that was silent, everywhere was filled with different sensations. You name it, other than lightening shots, there was some part of me that was feeling it. The majority was my old friend numbness, followed by tingling, pins and needles and pain. I was in bed for an hour during the day and never, once, managed to shut it all down. I relaxed as much as I could, I worked on taking each part, past relaxed and into what I call sleep, basically, so relaxed that it feels as though they are no longer there. My success rate, for the first time in ages, was poor. I could turn the intensity down, but I couldn’t find any silence and definitely no sleep. I have over the last few weeks, become used to this same problem when I am up and about, but then, there is, at least, distraction. Distraction is something I find effective, even if it’s only an effect on my conscious brain. When you are lying down, in total darkness provided by a mask and with earplugs in, there is no distraction, the whole point of my accessories. Distraction means lack of sleep, so they have to be removed. Also, the reason, that I work through my normally highly successful relaxation techniques, it removes the distraction of my body. It didn’t matter in the afternoon, I wasn’t looking for sleep, just rest. Yes, it meant my rest was more limited than usual, but I did still rest.

Night time was a totally different story. I don’t know how long it took me to find sleep, as when I woke at 4 am to go to the toilet, I couldn’t remember sleep, just my voice constantly saying “relax”. I should have woken with silence everywhere apart from the desperate message from my bladder, but even then, the silence wasn’t there. It was the exact same story when I returned to bed, and then when I woke once more at 8 am, still with only the memory of my voice in my head. It now over 24 hours, since I last remember not have wild messages from every part of me, bombarding my brain. There has been no peace, no time when I haven’t felt the desire for a silence, that just can’t be found. I am growing more and more tired, I know I must have slept, but the benefit of any of it has been lost. My plan, of getting more sleep, seems to be further away with every hour. Right now, I want nothing more than some deep refreshing sleep. There is little point in heading to bed, little point in lying down, when nothing changes, nothing goes away. I am pushing myself to stay awake right now, as I have hope that when the point of total exhaustion is reached, which isn’t far away, sleep will win.

At first, despite the annoyance factor, I found this sensation display, amusing and fascinating. I was beguiled by the range and constant changes all over my body, caught up in the desire to understand. That has worn off. All I want is, a short spell of peace, I’m not even greedy, it’s not like I’m asking for it forever, just when it’s time for sleep. Just to take a step backward, as I can deal with it when I’m awake, we can all deal with anything when we’re awake. The maddening thing is, that I am almost sure that it was the overactivity of the last couple of days, that brought it on. Now, it is the cause of overactivity, because it won’t let me rest. There are times when my health really makes me feel as though I am losing the plot, today is one of those days. I have always done whatever I can do to work with my health, but just occasionally, it makes it impossible to do so. When it takes over in this fashion, you just feel floored. I swear that somehow, every tingle, every spear that prods at me, and every area that feels dead, is draining my energy even further.

I know I will get some sleep. I will be so far past just tired by the time my afternoon nap comes around, that I will sleep, maddening sensations or not. Right now, I have things to do, I have so many things to do. Maybe, I won’t wait, just tidy through what has to be done, then go to bed. Blessed bed, my joy in this ever annoying world. Please don’t take that one thing away, at least not now.

Please read my blog from 2 years ago today – 28/12/2013 – Painful answers

Yesterday brought Teressa and John here for the afternoon and loads of explanations to the past week. When the doorbell rang I had to unlock the storm-doors for them and as I was turning the key I spotted…..

Sensational

Posted on December 23, 2015 by livinginalimitedword

Usually, when you lose feeling or your body creates a wrong sensation, it is normally localised, as in, you can isolate it to a nerve group. Those sort of changes, in my world, are normal, and that’s what has been eating away at me, this wide body madness just doesn’t make sense. How and why, do I have so many isolated, but simultaneous sensations outbreaks? How can two fingers on one hand, a patch the size of an orange on the other, and a six by eight-inch patch on my thigh, totally dead, at the same time? Surely there are no connections, or is there? Of course, there is, and it appeared like a flash of light when I was talking to Adam last night, not my body, but my brain. I have known from day one when I was first told that I probably had MS, that my brain scans were a mess. The MRI carried out by the ENT specialist to see if he could find a reason for my dizziness, didn’t show up what he expected, but it showed up a brain in a total mess. I had more lesions than most people do, even after years of living with MS and they were widespread across the surface of my brain. I remember speaking to one of the doctors when I was an inpatient, having all the other tests done to be sure it was MS, about what my scan meant. He told me at the time, that I was coping surprisingly well, considering, the number of lesions I had on my brain. In his opinion, I should have been having far more issues than I was, which was a good thing, as my brain was clearly working well on rerouting. Anyway I digress, my MS clearly takes great pleasure on working on my brain, rather than my spin or any of the other places that lesions appear, although, they weren’t totally free of damage. My brain, was it’s main and chosen target. If the lesions have been spreading in the receptor section of my brain, then it makes perfect sense. It’s not damage to a million different parts of me, just to a few important parts of my brain. A lot of people forget, that our skin, is actually the biggest producers of sensations we have. How else would we know if it were windy, or we were too close to the fire? If the receptors are miss reading the true sensation, lets say, of something as simple as my clothes touching it, well the options are endless.

When I realised that, oddly, a lot of the worry sort of fell of my shoulders. I know that it isn’t any better news, and it’s only a theory, but it’s one that doesn’t just make sense, it’s the one I prefer. I often find that making sense of something is cathartic, I went from tied up in knots, without out having the slightest idea where to start untying them, to being able to relax, truly. Yesterday, was a day of putting myself through a personal hell. I kept prodding at different parts of me, not just with a finger, but with all kinds of different things, from sharp to as soft as I could find, trying to stimulate my skin and body to react. I was desperately trying to track them, to make patterns that matched with the different nerve clusters. I found I could trigger all sort of sensations, from cotton wool, just gently brushing me causing a response of fire, to sharp points, not feeling sharp, but dull, dead and retained way beyond the time I was actually doing anything. All I was doing was proving what I already knew, and I wasn’t discovering a single thing that helped me make sense of anything. It doesn’t take a genius to work out that I was terrified that I might actually lose my right hand, just as I lost my left 8 years ago, also oddly, that started to go wrong, at just this time of year. The first signs, I had of that, was when we were decorating the house with Christmas decorations, I kept dropping things. Not in the normal MS way, but I was finding that my hand just couldn’t deal with the weight of things. My wrist would collapse, my hand would suddenly just hang for a few seconds and then be fine. The first week of January and it was totally dead. No reflexes, no feeling, no movement, just nothing, a dead lump of useless flesh around an equally apparently useless bone. It stayed that way for nearly a year, then slowly returned, not fully, even to today it is still weaker than it should be, but useable. Of course, I was worried, finding deadness in so many different places, terrified me.

So far, I have lost no strength and no usage of any part of me at all. It’s purely the sensations. Somehow, most to the things that I feel, that doesn’t exist, I don’t just feel, it’s as though they have had a volume boost, set to extreme. One of the common ones is on my back, I keep feeling cold, not just like a draft, but like ice being on my skin, and it just keeps getting colder and colder. It starts in my spin and normally heads across the left side of my back. It doesn’t seem to matter what the sensation is, it always starts small, and spreads. For the last week, I don’t think I have had a single minute where there isn’t some wrong sensation somewhere. Equally boosted, are the small spasms that I have had for years. They used to be just this annoying feeling of a tight area, not tight enough to cause pain, just tight enough to let me know the muscle had constricted. Some of them, have suddenly started to produce a needle stick sensation. Almost as though they are shouting at me, “hey, I’m here!”. I am totally fed up, reacting to itches, tickles, pins and needles and so on, I would give anything, just to not feel. But the concept that it is the receptors in my brain, that have gone wrong, rather than my entire body, well that makes it somehow, that bit more bearable. Having said all that, I have two areas, that the sensation disappeared from a couple of months ago and has never recovered. I lost three of my toes on my left foot first, followed a couple of weeks later, by the same three on my right foot. I can now feel nothing from either set. Even though I am reasonably sure about the recepters being at fault for the majority of odd sensations, I don’t believe, they have anything to do with my feet, and I’m not totally convinced yet, that they are behind my right hand. It is quite happily coming and going, never totally right and spending more time dead, than alive. Equally, unlike all the other patches and area’s, the lose of feeling in my thumb and index finger, the size of the area never changes and so far, it hasn’t spread. I would be happy to put the blame down to my receptors, but for one reason, there are no changes in sensation. It is constantly lose of sensation, no burning, pins and needles, nothing other than lose of everything.

I spent a large part of yesterday reorganising how I do everything I do online. I have tweaked, changed, reordered and reorganised because, I have to have more time, less pressure, more space to do other things like relax. Living with PRMS isn’t a picnic, it plays tricks with you all the time, right now, I feel as though I am losing the game and that alone isn’t a nice feeling. I don’t know, no one does, what is ahead of me. If my changes will have the desired effect, as I no longer really know what is going on. I’ve never had to deal with something like this before. In some ways, that terrifying, in others, it feels as though I am heading into some kind of adventure. There is no point me sitting here fretting about it, as if there is one thing that I have learned and that is, PRMS does whatever it wants. At best, I can tinker at the edges, help to keep it steady or when it’s running wild, search for the brakes. The next month is going to be one of two things, fingers-crossed, it will turn out to be the better of those two.

Please read my blog from 2 years ago today – 22/12/2013 – Time to let go

This is going to be a day when nothing happens when it is meant to. At the minute, the hall floor is covered in the shopping delivered by Asda about an hour ago, the rest of the house…..

On the move again

Posted on December 22, 2015 by livinginalimitedword

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…..

Knowing too much?

Posted on December 18, 2015 by livinginalimitedword

“You have to know your body!” Probably, one of the most important things you learn early on, but can you know your body too well? I sometimes wonder if you actually can, if you can become too aware of every ache, pain and sensation. For sure, I believe that when it comes to sensations that the answer it 100% yes. Without a doubt, I now notice every single tiny area of me, that isn’t doing what it should be, normally nothing. In the distant past, I probably wouldn’t have noticed my leg getting mildly numb, yes, if it were severe, but that tiny tingling start, never. In fact, I’m sure that my body would have intervened, moved my foot or my leg, just to check if it was just a mild circulation issue, before tell me, that it hadn’t worked. Think about how many times in your life, you have gone to stand up, just to find your leg was totally numb, and you didn’t notice a single thing until, you stood up. My post the other day highlighted that I now notice, from the first seconds. I can feel that small section the size of a 10 pence piece, and every millimeter as it spreads. That’s not normal, or an everyday reaction from an average person. I know, really know, what all of my body feels at any second of the day, and I do it without thought, without looking for it. It appears that I have trained myself to monitor, to keep my body in check without the aid of any fancy monitors.

I’m not really one for buying tools, those flashy looking pieces of kit that until recently, you only found in your doctor’s surgery, or just a few years further back, only in a hospital. These days, it appears if a doctor can own it, so can you. If you felt the need, you could fill your home with a mind-blowing range of equipment, to tell you, your still alive. The only piece of kit I have bought is a pulse and oxygen level monitor, and it has turned out to be exactly what I expected, not a warning light, but a confirmation of what I know. For the first week I owned it, I found myself checking, each change in my body, that I thought might be down to low oxygen levels. Most of the time, I was right, not about the figures, but there would have been a dip, or a rise, enough for me to have noticed. Just to double-check, that I wasn’t about to write a piece of rubbish, I just sat still and thought for a second about both. I made a prediction and put my monitor on my finger. My pulse, which, no I didn’t count, was spot on at 86, my oxygen, well that was 1% out, it was 92 instead of 93. I knew how I felt and I have now also learned, what the monitor will say, I do admit, though, not always as accurately as I did just now, but I’m normally very close. In some ways, that is good, it means I no longer worry about either, they are known to me, but, how many people could do just the same? Only the chronically ill. We’re pushed into knowing, into being our own second by second doctor, because, we need to know when things, are going really wrong. We need to be armed with the facts so that if we need to relate them to our doctors, we know, just what to say. Well, that’s one way of looking at it.

It could easily be argued, that if we are that body aware, we are probably paranoid and looking for things that aren’t there. Finding small things and turning them, into bigger things in our own minds. Worrying over the trivial and becoming self-obsessed. It’s OK, I know all the negatives that could be applied, all the things that people who don’t live this lifestyle, often choose to ladle upon us. It’s OK, I don’t believe that but, there is possibly a tiny speck of truth, in some of it and I don’t think we can escape it. When your not believed for year upon year, you do become paranoid, not about what you feel, but about being believed. I learned to monitor my body so many years ago now, that I can’t actually tell you exactly when it started. Probably back in my twenties, when I was first told they could find nothing wrong with me. I knew they were wrong, and the only way I could prove it, was to keep checking until, I can paint a picture they couldn’t ignore. At first, I focused on what was right, and knowing what right was. That sounds odd, I know, but if you don’t know what normal is, how can you tell if it changes? It actually took quite a long time before, I was sure of the range that normal lived in, but once I thought I knew, then I could really look for and understand what was wrong. When I had what I now know were flares, I was then clear about what was happening to me, the fact the doctors still didn’t believe me, didn’t matter, because I knew. The doctors could believe what they wanted, I knew, and that meant a lot.

Being aware of your own body, to me can only be dangerous if you are obsessive about it, or if you find something, that worries you, and you do nothing about it. I think there will always be times we find something odd, something we haven’t felt before. It is bound to happen to all of us at some point, as bodies are like that, they do odd things. It’s what you do when you find it that matters. I can remember sitting here once for about two hours, totally convinced that I was having a series of mild heart attacks. I was getting intense pain right over my heart, and over into the center of my chest, upwards into my armpit and upper left arm. I sat here, actually unsure if I should even move, or what I should do. The pains kept coming, fading away, then happening again. It’s now a perfectly normal part of my life, but then, it had me scared rigid. Which didn’t help, as the pain then started spreading into my neck, because of stress. It was in fact, the very first time that I had had intercostal spasms. I wasn’t dying, just having my first MS hug. I knew about them, but I didn’t know they could be one-sided, something that my frantic Google searches eventually revealed. I wasn’t only relieved by what I found, but that I hadn’t called 999, which probably should have been the right response. There was something in the back of my mind that stopped me, this window of doubt, that kept saying, “if it were, you’d feel worse”. That said, the sensible thing would have been to pick up the phone, I might have felt stupid, but it would have been the correct decision.

If I were sat here, day in day out, consciously scanning my body, I would say that was wrong, I’d say it was for anyone. The big difference is, that I don’t do it consciously, I don’t remember when I last did. To me, I just live my life and my body screams at me about the tiniest things. I don’t understand why it doesn’t even try to intervene any longer. Why when part of me goes numb, that I don’t just change position, but I don’t. It just shouts for attention instead. In some ways, life would be more peaceful if it did, but I can’t unlearn what I’ve taught myself to do. I see it, as just another one of those things, that we the chronically ill, have to live with. Like everything, it has its good points and bad points, but it’s just what it is, and life will go on despite it. Since I started writing, I have lost my right knee four times, the upper left-hand section of my face, and the entire lower half of my right leg, from spot right to the entire thing, now gone for over an hour. I have had pins and needles in my left foot and left hand. Tingling in my left shoulder and my left foot has been on fire. My lips, have been itchy, then decided to hang on to the effects of my scratching them, for about half an hour after I last touched them. My stomach has been so painful that I have had to stop, stand and press into it until it passed. Spasms in both my diaphragm and lower intercostals, combined with upper intestinal pain. I had tingling traveling around and over the right side of my head and finally, shooting pains firing from the base of my left heel, firing upwards along the path of my shin bone and my ankle has turned to lead. A perfectly normal set of information being relayed to me, in the space of an hour. No matter what I do, I can’t stop hearing my body, I know it too well.

Please read my blog from 2 years ago today – 18/12/2013 – Who needs legs?

I had to head to bed early again last night, a bit upsetting really as for the last couple of weeks I have made it through to 9 pm every night, then last night appeared and I disappeared at 8. I had found myself…….