A new path, a new train of thought

I found myself apologising to Adam once again for the fact my body does nothing other than fall apart. We have been married for nearly 17 years, when we married, I honestly didn’t foresee myself being in this condition for at least another 20 years, yet here I am constantly crumbling. Clearly, we had been discussing the visit from the podiatrist and the impact of what she told me, is going to be on both of us. That’s one of the constant problems of living with chronic poor health, it no longer just impacts on me, it impacts on us. Every small change, every new development influences both of our lives. Nothing, not even my feet, are just another part of my body any longer, they are another part that needs Adams attention. Yesterday wasn’t just a wake-up call to me, but also to him. It turns out, that both of us thought that my feet were looking better than they had in a long time. So to hear that it is in fact, the total opposite, has left us both at a loss and grateful that she is posting out a leaflet which will show us both, what to look out for. I don’t know if it has affected Adam in the same way as it has me, but I have found myself thinking about various part of me, and wondering, if I am also ignoring something else, that I shouldn’t be.

That feeling isn’t something new, it has just been given a new boost in its intensity. When you have an array of conditions, pains that appear and vanish as quickly, others that stay there nagging at you, well, you have to wonder just what is behind it. There was a time when I noted them all down and took them with me to each doctor appointment, now, well now, I mainly dismiss and ignore them. I can’t help though but wonder, if, I might just be ignoring something that I shouldn’t. Yes, our doctors are there to diagnose or put our minds at rest that there is nothing wrong, but if you were to run to him daily, he would soon stop doing both. So you start to ignore or you start diagnosing for yourself. It is amazing just how much you can put down to your main condition, I do it now, as, on the odd occasion that I have pursued it, that is exactly what the doctors have landed up doing. My course of action is just saving the NHS a fortune in tests and adding another fuzzy question mark to my collection of uncertainties. If the truth be told, I frequently still add one, even after the doctor has placed the blame at my PRMS’s feet.

So what do we do? If we run too often to our ever nodding doctors, they start to dismiss us, to see us as a constant annoyance. Their rules, say that they have to treat us, they can’t dismiss us or swat us like flys, but I have been faced all too often by those who I can see would just love to do exactly that. There are those who prefer to put our symptoms down to some kind of neurosis, or our misunderstanding of just what our conditions can do. No matter how strong other tell me that I am, I have never, found the strength to simply turn around and say, “I’m not going home again until I have an answer. I am in pain and that pain doesn’t go away. I need something done, something that is going to put an end to it. You’re the doctor, treat me!” I have lost count the number of times I have wished to say just that, but what do I do? I do what I believe far too many of us do, I nod in return and I leave with the exactly same problem as I arrived with, with nothing done to even help me in the slightly.

If Doctors can’t or won’t treat the things that are major to our lives, what chance do we have when our health turns silent and painless. Yes, we are now aware of what could happen to my feet, but I have been left wondering what happens when other sensation nerves die, when I can’t feel pain in other parts of me. On the surface, pain vanishing sounds like heaven, but, I now see that if any pain suddenly vanishes, the truth is, I probably have a much bigger new problem, than I did before. I can’t help but wonder, what my doctor would say if I were to phone him, worried about the fact, that some pain has vanished. I always knew that loss of sensation was part of my future, but for some reason, I never saw that as a problem. I never once thought that loss of sensation could be dangerous, well not beyond having no sensation in my hands, that one is obvious. But what happens if you can’t feel the fact you’re having an appendicitis or that you have kidney stones. Feet are simple, you or someone else can see your feet, but what happens when there is no pain in a place that can’t be seen?

I’m sorry if this seems like a somewhat odd post, but I have spent the last 24 hours, thinking about my future health in a somewhat odd way. Like everything else, all I can do is wait and see. That’s another problem that comes with chronic ill health, all we can ever do is wait. For every answer we think we have found, it always finds another question, another problem, one that we didn’t expect, one that wasn’t planned, to throw at us, and all we can do, is wait, for the impact to arrive.

 

Please read my blog from 2 years ago today – 24/03/2014 – Breaking the myth

“There is little or nothing that can be done”, that’s a phrase I have read over and over again in comments and posts almost daily since I started blogging and posting on Twitter, it’s also the identical phrase I have heard for much. much longer, from my own doctors. For all of us I am sure it isn’t just not what we don’t want to hear, but is also the one thing that we thought we wouldn’t hear ever again once we had that all so important diagnosis. So much so, that apart from getting us through the benefits system and an answer to all those who look at you as though you are a nutter and there isn’t anything wrong with you, a totally pointless effort in obtaining. I have written before…..

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…..

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……..

Certain uncertainty

Sometimes things happen that we can’t be totally sure why. Things change all the time, that is just a fact of life, but what I am talking about here, is something that could be or could not be connected to something else. If you have read for a while, you will be well aware of the problems that my PRMS and COPD combined have had on my breathing. I was sent by me GP, just over a month ago now, to see my COPD consultant as my breathing and oxygen saturation were getting worse and worse. The majority of my breathing problems are really caused by my PRMS, it thinks it is funny to tighten and collapse both the external and internal muscles that are connected in the motor actions required to breath. Trying to get air into your system when you diaphragm and intercostal muscles are clearly in spasm, is hard enough. Add in the fact that the internal structure of your lungs is not strong enough to hold their shape, well, you get less and less air in each breath. Before I went to see him, I expressed several times, a concern about the fact that I often felt as though my brain wasn’t receiving enough oxygen. I was more confused, more muddled than usual, and I kept getting terrible headaches, especially when I first woke in the morning. When I left the hospital clutching a nebulizer and a prescription for a steroid inhaler, I wasn’t convinced that they would change much. Yes, I understood that their purpose was to keep my airways as clear as possible and as open as possible, but I couldn’t see how they could help when my lungs were being crushed.

So here we are over a month on, I have to say that I am totally surprised by the improvement. I am a long way from what I would call normal and no, they don’t stop the struggle when I am being held tightly in what feels like a corset. When things are really bad, I am still only managing just around 88% saturation, but the rest of the time, things feel better. I even managed to peak at 97% the other day, it was only a peak, but that is almost normal. I kept a close eye on it the other day and I was actually disappointed to find that my average had fallen to 92%, one down on where it was before. The figures don’t add up with how I feel. I haven’t woken with a headache nor have I woken feeling muddled, for nearly two weeks, and I actually feel, as though my breathing is just that bit easier. It’s not as though I can take any deeper breaths, or hold it for a longer length of time and as I described the other day, there is actually a new addition to my bodies determination to not let me breath. Feeling better just doesn’t add up at all to what the figures and my body is actually telling me and doing to me. The feeling that most of the time my lungs are under attack hasn’t changed, but I knew it wouldn’t. That would have taken something that would undo and change the damage done and is being done by my PRMS, but I still feel better. I can only guess that the twice daily treatment with the nebulizer and the steroids are really helping to build up and maintain the internal strength of the air sack structures. Somehow, they seem to be able to withstand the crushing just that little bit better. I am no doctor, but when the pressure is almost the same, but the actual air reaching my system seems to be more, well it is to me is the only logical assumption, that could explain how I feel. I still have another month to go before I go back to the hospital, it will be interesting to see what happens during the second full month if anything. All I really want is to see that oxygen saturation rise.

Three weeks ago, I woke in the middle of the night because I had two really painful spasms in my left foot. One was crying out at my from my instep and the other had a total grip on three of my toes, little one inwards. I had to sit-up to deal with it, but as I pulled my leg out from under the covers, the movement triggered a third, screaming upwards over the top of my foot. It wasn’t something that I thought of note at the time, it was just another set of spasm, ones that once massaged and stretched in every direction possible, cleared. As often happens, over the next week, the one in my toes and in my instep came back, as if to just remind me how painful it really was. I have never really worked out why spasms do that. The milder ones, just vanish, not never to be heard from again, that would be bliss, but the severe ones, they always chatter on for a while after, a little like the aftershocks that follow an earthquake. I couldn’t help but notice that every time I put on or took off my socks, my toes were always numb. It didn’t bother me at first as I never felt it any other time. Then last week, that changed. I could feel they were numb every time I stood up and whenever I took a few steps, the only ones I take these days. On Wednesday, I was suddenly aware that it was spreading. I was now numb not just in those three toes, but for about two inches above them into my foot, both in the sole and the top of my foot. I have been warned many times in the past that I should be careful with my feet, especially as I refused to wear shoes. The MS nurses and OT’s worried that I might cut them, and not having a great deal of feeling in them as it was, that I might not notice a cut and it could fester without my knowledge. The irony doesn’t escape me, here I am now a full-time wheelchair user, and suddenly, my foot has decided to start dying on me.

I am more than used to having different areas of me vanish, or have that numb feeling, but just like spasms, they don’t normally last that long. That was what happened yesterday evening, my entire left leg from half way down my thigh, right down to my toes, joined in with that totally numb feeling. Luckily, numb isn’t dead, it more a sensation of numbness, not quite as dull as you feel after a local anesthetic, more the feeling that follows about an hour later. If I prod at it, well I am aware that it is being touched, but it is an odd sort of spongy feeling, even when I press something pointed into it. It lasted about an hour or so, then slowly it returned to almost normal. I say almost, as since then my calf muscles have been tingling and the majority of the sole of my foot, is not totally numb, but dulled. I have to admit to being more than a little concerned. I may not walk anywhere any longer, but I do still need both legs for transiting from my chair to any other location. Last night, that nearly failed as well. I was in the bedroom after making a midnight trip to the loo and I stood up. Just as I was about to lock my knees, both legs started to shack, with clear tremors above and below both joints. For a fraction of a second, I thought I was going down, that instead of the bed, the floor was going to be next location. Then normality returned and I pulled myself upright. I don’t know what caused it, but it left me shaken, as it has never happened so strongly or so clearly. I have spent so many years worrying that I would lose my legs. Years, of fear and sheer panic about the whole idea whenever there has been mild numbness. Now, that it is closer to reality than it has ever been before, I am concerned, but somehow calm about it. I know all to well that it might come to absolutely nothing, that in a couple of days, normality might have returned, but right now, it’s my new reality.

I think that is something a lot of people miss when they think about chronic illness, we never know what is going to happen next. That things are always on the move, doing this. or that one day and something totally different the next. You never know if it will last minutes, hours, days, weeks, months or forever. Each new event could be your reality forever and all you can do is wait and see, wait and hope, wait and find out. Our entire lives are a waiting game. Waiting to see what happens, if any of those symptoms you know about, but haven’t had to live with yet, might just appear. Waiting to see if you will reach all those worse case scenarios, or any of them at all, waiting to find out, just how long you have to live. Nothing is certain, nothing is ever guaranteed, other than the fact that we just don’t know, we know nothing, other than what has been and what is. Our lives aren’t about the future, we can’t plan that, as we can’t even plan the now, with any certainty at all. Right now we have the body we have, right now we have the brain that we have, but an hour from now, we might have neither or a completely different configuration of both. Uncertainty is the only thing that is ever certain and despite all of it, everyday life goes on.

Please read my blog from 2 years ago today – 31/10/2013 – Vanishing lifetime

I went to my bed last night at 7:30, exhaustion had made the whole day difficult to get through and when Adam came home I told him then that I really needed to sleep. I sat up for another hour as I wanted to spend some time, no matter how…..