In harmony with ourselves

The second I stop moving, almost my entire right side starts going numb. Stay still for a few minute, and a gnawing cold settles on my skin and starts heading for my bones. The secret that I have to keep reminding myself about is to not sit still. As long as there is even a vibration traveling through me, it stays below my sensation levels, remove it and the cycle begins. It’s been happening in my legs several months ago now, the right worse than the left, and as I reported the other day, the lower half of both legs, appears to be numb most of the time now. When it began, it began just as is now happening in other locations as well. Stay still, and a small area about the size of a 10 pence piece would vanish into numbness, slow it would intensify and if I didn’t stop it there, it slowly spread out to take over my entire lower leg. Over the space of several weeks, it became stronger I suppose, as it didn’t need me to be still all over, just still in that limb, and it’s strength kept growing. Now I have no control over it what so ever, I could get up and dance, and it would stay numb. Once the nerves start the process, it continues until it chooses to leave, or I go to sleep. That, though, isn’t always an answer, I often wake now, with my entire leg numb.

Almost always, it started on the outer edge of my calf muscle and spreading from there, until it encompasses my entire calf. Within a few weeks, the same story was true of my thigh, but there were two trigger points, on one the upper surface of my knee and the other on the outer edge of my thigh. Just like my lower leg, at first, I could distract it, and it would retreat, now movement doesn’t work. Together they are like some sort growing web, spreading over my skin, reaching out for each other. I wasn’t that bothered about it, at first, as like anyone with any form of MS will tell you, numbness is normal. In fact, MS has a trick I haven’t heard of from any other condition, other than those that do major nerve damage, you can be numb and in pain, at the exact same second. We all go through odd phases, where something like this will just run rampant, driving you mad, then one day you wake and it’s gone. I don’t think that over the years, there is a single inch of me that hasn’t been numb at some point. A few weeks with numb legs, so what! Then it suddenly also appeared in the outer edge on the right side of my ribcage, followed a couple of days later, on the right side of my face, then my right arm. I have no located about 14 different points where this spreading numbness can and does appear. Sometimes it just spreads locally and goes, others it keeps growing until it meets up with a neighbour. It feels like my entire right side is slowly turning to wood, as this numbness could also be described as a sensation of my skin and a couple of inches below it, solidifying.

I can’t be sure, but if it is just the dropping temperatures and that the numb areas are hyper sensitive to it, or if it is just another screwed up sensation, but any area that starts to go numb, now also feels as though shards of ice have been shoved into it. The intense cold is at times painful, as I said, numb and pain, are totally possible in the same place. It may seem odd, but I am far more bothered by the cold than I am, by the numbness or even the odd solidifying sensation. I hate being cold and as it doesn’t matter how many layers I put on, or even if I sit right in front of the fire, this cold goes deep inside and it doesn’t thaw. Again, I have been attacked by penetrating cold in the past, but then it was in tiny areas, just half a hand, or a small area or my face or foot, but two nights ago, about a third of one side was frozen to the core. Sometimes, it can really feel as though your body is out to drive you as mad as possible. That it seeks out, the things that you hate the most, then works on finding ways of putting you through, just that exact thing. I have spent many summers cursing because, I can’t find relief from the heat, something I know many will be able to empathise with. This is just as bad and in some ways, worse. Our bodies are self-programmed to run from the cold, we know how easily it can kill and how important being warm really is. You can’t run, from what doesn’t really exist. You can’t compensate for it, cure it or even change it. Your body is locked in a discomfort so intense and you’re totally powerless. I know it’s not that long ago that I wrote about how disturbing losing my calf and foot was, now I don’t just lose it, it then, throws in cold to make sure I haven’t somehow noticed its oh so clever trick.

Last night, it even managed to stop me from going to sleep. I had woken in the wee hours of the morning, desperate to go to the loo. My first steps were somewhat faltering, as standing on a foot that is busy telling you, it’s not quite there, isn’t that easy, but compared to going to sleep on my return to bed, it was easy. I defy anyone, to actually sleep when one side of your body feels as though you are lying on an ice rink. I don’t know how long it took for sleep to take over, it did, that’s all I know, but I also know that I tucked that duvet in tightly around me, far more than once. Life when you can’t trust your body is hard to adjust too. When your tired and all the logic in your life is still hours away, it’s even harder. You can tell yourself a million times that what your body is feeling, isn’t really there, but, when it’s equally screaming at you, saying “I’m cold”, “I’m in pain” or whatever chosen sensation it is that day, all arguments fall apart. We automatically, trust those sensations, those messages, that have got us through life in one bit. Having to convince yourself that that story is now a lie, just doesn’t work. How long do you hold your hand over a candle, before you accept that you’re really being burnt? Well, that’s how fast our brains join in the argument, and it has learned to trust those feelings, not you.

Is it any wonder that we are always tired. Our lives have become one long argument and always without a conclusion. We all know just how tiring one argument can be, imagine a million per day. When your body starts lying to you, and every single action you take has to be double and triple checked, you, at first, look for any distraction. Hence, I believe why I never used to sit still. There is a point in every situation when distraction fails, then you’re caught, trapped in that argument and you know totally, that neither side can win. All you want is peace, a moment where your body, just works like everyone else’s, when you can be at peace with it. I have reached that point. The entire side of my body, can’t be numb. There is no way that it’s -10 on one side only. All I want, is a little peace and quite, a body that’s in, if only for a few moments, in harmony with itself.


Please read my blog from 2 years ago today – 14/12/2013 –  No more walking

Last night was the night from hell, it was my own fault as I had quite simply been on my feet far too much but I had a task to carry out and I wanted it done. Yes I know all about pacing but there are times…..

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……..

No pain can be worse than pain.

I woke this morning with something missing, my left foot. It was totally dead to everything, which as you can imagine caused just a few problems with getting out of my bed, it hadn’t just ‘gone to sleep’ as in lacking circulation, it was totally missing as if someone had actually cut them off. This is far from the first time but the scary thing always is will it return, I started by working out if it was just sensation or had I actually lost movement as well, luckily it was just the feeling. Standing up though when you can’t feel the ground is a very strange thing, like trying to drink coffee after being to the dentist. You can’t actually work out where your own body is, you know where it should be but there are no signals to confirm anything. I simply had to trust that it was doing what I asked and quickly as I had to get to the loo, getting across the hall was interesting to say the least, my foot just wasn’t sending back any signals to confirm where it was and as the hall was totally dark I couldn’t actually see anything either. From past events I knew that the danger was I might actually do some damage to my foot, in the past I have pulled muscles, stubbed my toes and caught toe nails in the carpet, pulling my foot free results in breaking the nail beyond the point of comfort. Today I was lucky, I can’t be sure if it was because I forced it to carry me, or it was just luck, but by the time I had been to the loo, my foot returned to normal.

I have been warned constantly by the MS nurses that I have to be careful with my feet, as lose of feeling is a common problem not just for me, but for most people with MS. Just like diabetics, it is easy to have cuts that you don’t feel and can become infected with ease. I have because I insist in walking around with bare feet had issues, but I find that I feel the floor better when I am not wearing shoes. I have lost some feeling permanently already but at a level I can work with. When my left arm died for several months, I had bruises and small cuts all the time, when you have no feeling it is a constant fact that you bang it off things and cuts gain from trying to use it to do everyday things like opening cans and jars. Not having feeling is a huge hazard, not just a disability.

When parts of your body vanish like that it is scary in the first few seconds, as always the worry is that this time it may have gone for ever. I have lost count on the number of times that I have stopped dead and just waited, totally concentrating on the dead area, just praying it will return. I know well the areas that vanish just because they feel like it and I also know that one day they may be gone for ever. I fear the most, understandably the lost of my feet, legs and hands. They daily give me reason to worry as well, for the last few days it has been both of my hands that have been numb and painful, alternatively, so my foot suddenly being gone was rather a surprise this morning. I often find myself sitting wondering how I will manage the day that I no longer have the use of them for ever. I know that I can manage with just one hand, but to loose both is something I just don’t think I could cope with. It’s hard to imagine a world were I can no longer make a coffee, carry a plate or type. It’s a future that I don’t know how well I will cope with, I know it still won’t be the end, but it is so alien that I can’t get my head round it really.

Everyone knows that MS causes pain and as bad and difficult pain is to deal with, in many ways no pain is in many ways worse. It may sound like a blessing that the pain has stopped, but the consequence of that so called blessing is something far worse.

Pick a limb any limb

I am happy to report that the pain in my leg eased as the day went on, it is now at about normal again, painful but not making things unbearable. It’s strange I am sure to anyone who isn’t themselves living with chronic pain to think that I describe what I know 10 years ago, would have had knocking at the hospital doors in the belief that I would be about to loose my leg, as normal. There are so many shades to that word, another word that doesn’t really say in detail what it means. Just like if I was asked how I am today I would say “I am fine”, but I am in the eyes of 10 years ago anything but. Normal moves with us through out our lives but it means so many different things, it is in fact a word I would take great pleasure in getting rid of but there is little to replace it with unless we all start using long sentences in it’s place.

Yesterday leg problem has left a shadow pain and numbness, it is too soon to try and assess if this is new damage or if it to will clear back again, but at the minute almost all of the top of my foot has a layer of numbness, and a feeling as thought it is swollen, which it isn’t. When I was trying to go to sleep yesterday in the afternoon, which I did eventually, I was not to surprisingly thinking about how I have for months being saying that that leg is not right and that I have feared in the past that it may stop working just as my left hand did several years ago. I still fear that it will go again and not return, but I have nothing to base that on at all. I guess once you have woken up to find a limb is dead and useless, it is a reasonable fear to have and to extend to other limbs. There are so many things that MS could do, but loosing both my hands to me would be the worst that I could imagine, I know it sounds silly to say I need my hands, but as I walk so little anyway, my legs don’t seem quite so important. All my limbs now are constantly a mix of pain, tingling and numbness, none are normal in the true sense of the word. They have all gone downwards over the past year, I have clearly lost strength and muscle tone, but it is to me the pain that worries me the most. Pain is there because there are lesions damaging those nerves, it is normally the start of a progresses over time and if they are attacking the nerve covering it is only time, before they cut the messages off and again something will be dead.

I know that ultimatum I will loose all four, something that I heard the mother of a young woman who was in the waiting room at the hospital, telling her not to think about things like that as it wouldn’t happen to her, she had to think positively. I’m sorry but I think that is total rubbish. I don’t think about it all the time, but trying to pretend that things aren’t happening makes no sense at all. I had to accept what illness I had, and accept everything that it could do along with that. Trying to hide from the truth, only prolongs the adjustment process, it has to be faced and faces earlier rather than later. Knowing the worse case scenario doesn’t make it happen, it just means you are ready for it when it does. The morning I woke to find I had a totally useless left hand didn’t stop me going into work that day, it was just something that had happened and I had to work out how to manage without it. Several months later it started to come back but the point is I didn’t panic, I knew it could happen and I wasn’t phased when it did, upset yes, but I got on with the job of living, after all that is why we are here to live, not morn constantly until we die.

Controlling Reality

Another night when I ran to my bed as soon as the TV let me,it’s mad the way that we let that box in the corner rule our lives. I know you will say why not record but I record all evening all evening the best of what I’m not watching, that way I have reasonably good stuff to watch during the day. I was really in a mess yesterday and the day before from about lunch time onwards, just like both day’s I really don’t feel that bad at the minute, but I am just waiting for my brain to shut down and for me to get lost in a fog filled cavern with custard up to my waist. I couldn’t order my thoughts or manage to keep getting things done, I just went round and round in circles, not completing things and not knowing what to do next. When things are that bad it is a strange place to be, on some levels you don’t care as what is there really to care about, I’m alive and able to situp so I’m OK, but then there is this feeling that I am out of control and I have no way of sorting it all out. I feel numb and as though there is the huge bag of cotton wool around me, keeping the outside world away from me, but not allowing me to get through when I want to. I sort of float from one place to another pulling myself in line for a few minutes, then loosing the control again, and I am just waiting for the day to pass as fast as it can so that maybe tomorrow I will find my personal balance again.

I am sure that many people spend their lives there and I maybe I will one day to, and would that really be that bad? To be honest that is a hard question to answer, when I am clear enough to think it all through and what it would really mean then maybe at this level I could live there. If it was worse then yes it is that bad, and it is not a place I want to be, now or in the future. There are these levels of acceptance, marks in the sand that I don’t want to cross without a way back, anything is acceptable if it is limited, if you have the reward waiting at the other side, that there are good spells to take shelter in. Without those clear areas, it is really hard to know what it would be like there for ever and more intensely than anything I have been through so far. What I do know is if I was in the really bad phase, worse than what I have now, I would need someone with me all the time and that is the place I don’t want to think about. Strangely it is actually something that I and others would have to measure it by would be a case of do I have enough about me not to put myself in danger, as in not burning the house down by trying to cook something, rather than looking at the things I can do. I just had this silly image in my head of myself sitting on the floor in front of our gas fire with a pan, if I’m that out of it, please world line up to shoot me.

Everything seems to gang up on me when I am in that type of mess, it is almost as though it is a conspiracy by my entire body, the pain levels rise all over me. The other day I mentioned needing to use my catheters again well they are part of it as well, everything just stops working. Last night when I went to bed the pain everywhere was nuts and that included all the pressure and pain spots across my entire abdomen, proof to me that my bowel problems are all part of my MS. The only thing that was no worse or changed in any way were my lungs, but this morning when I woke my throat was tickly for the first time, once I had had my coffee it settled and now it actually feels a lot clearer, so not part of but possibly the catalyst. I am tired this morning just as I have been every morning recently and again I want my bed, so I guess I am heading for another afternoon and evening just hanging in there until I can sleep out the remaining hours and a new day has begun.

I know that the likely hood is that this is just a phase, or a flare coming from my chest. I know that in a week or so, I will probably have actually forgotten that it even happened, as that is the way my life is and one of the reasons that I write, as Adam reads and he will always be able to find the information that Doctor needs in here, even if my memory can’t find it in my head. Right now I have bad spasms in my left leg and I can feel the fog moving in minute by minute, so good bye controllable reality, we seem to be slipping a part again.