Tag Archives: numbness

A new path, a new train of thought

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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…..

Caught in a quandary

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I decided that I had nothing to lose, I had what I needed here in the house and today, was as good a day, as any. Adam, of course, wasn’t so sure, he questioned, and double checked my knowledge of my drugs, then agreed it was a good idea. I thought that as I had enough drugs in the house, that it might be an idea, to run a test and for just 24 hours, to increase my slow release morphine. Last night and this morning, I have taken one extra 10 mg tablet. As I explained to Adam, I take 10 mg fast release boosters all the time, so a slow release tablet was going to affect me even less and, was perfectly safe. It’s kind of hard to know what, if anything that it might have done, as I had a bad nights sleep last night. Without a doubt, my pain levels are slightly lower, but I wouldn’t stand up and declare it’s a miracle, the pain is still too clearly there for my liking. The prolific numbness and pins and needles appear slightly less, so yes there is an improvement, what doesn’t fit was last night’s sleep.

Morphine is renowned for causing nightmares and vivid dreams. Between 9 pm and midnight last night, I had an odd vivid dream, I know that could be caused by anything, but when I was popping booster after booster a while ago, I had vivid dreams. When I forced myself, to cut them down, regardless of the pain levels, the dreams went away. Once more, I find myself unsure and without clear direction. I don’t have a big enough supply of spare tablets to keep testing for a few days, so I am left with that life long quandary, what to do for the best. Why does life have to be like this? Why can’t just for once, the choice be simple, straight forward and without problems? I have been living for months now, with my pain and sensations way above what any sane person would find acceptable, but I can’t find the answer to them. I am already on the two most common drugs prescribed for dealing with wild sensations, such as the ones I have. Gabapentin and Amitriptyline. Apparently, Amitriptyline is not effective above the dose I am already on, but it might be worth asking for the Gabapentin to be increased, as I’m not quite on the highest dosage.

It was in fact, one of the things that I discussed when I was at the pain clinic, but, wasn’t pursued at the time. I was in one of my stroppy confused states, and Adam wasn’t with me to assist. The Doctor managed to wind me up within minutes of my arrival, and as I got stressed, I became more and more confused, argumentative and desperate to escape. It started over my not having the memory to be able to tell him, when I last saw my Neurologist, then went rapidly downhill from there. Clearly, he had no understanding as to what MS does to the brain or the effect it has, on our ability to deal with situations we’re not comfortable in. Within two years of my diagnosis, they gathered the information to confirm that I have extensive brain damage. There was even then, clear signs that I had frontal lobe damage and it was causing emotional instability, especially when combined with anything to do with my memory, it is a bit like living with attention deficit disorder. Hence my inability to now deal with change or people I don’t know, the reason that Adam is now always my link to the outside world. In some ways, I wish that meeting had been filmed. It was a perfect example of my brain, spinning out of control and leaving me, far, far behind it. All that aside, an increase in my Gabapentin, might just be the answer I’m looking for and clearly worth discussing with my GP.

On New Years day, just as I did on Christmas Day, I spent the whole day drinking bucks fizz. It took me from when I got up, right through to the evening to drink an entire bottle of Cava, as Adam doesn’t touch alcohol at all these days. I know, before anyone says anything, that alcohol isn’t the answer to pain or anything else. Yet the combination of a booster pill, both morning and afternoon, with the steady, slowly drunk diluted wine, worked wonders for me. It was a bit like stepping back in time, as the closest I can put it, is to say that I felt as I did about six years ago. On New Years Day, after days of planning, I even managed to do some cooking. So OK, it doesn’t take a genius to cook scrambled egg, and I did drop one whole unopened egg on the floor, but I did it. I also cooked the steak, new potatoes, mushrooms, cauliflower, broccoli and white sauce, later in the day. All of which remained where it was meant to be. I haven’t even attempted to do such a thing for a really long time, and to make it, even more, surprising, I did it all from my wheelchair. Yes, I was left tired, but I enjoyed it. My self-medication got me through two days of activity, that would normally leave me in incredible pain, exhausted and unable to function, I was only half way there. I don’t know if there is some kind of answer hidden in all that, something that might help me in the future, but it did make a difference, one that anyone would have been able to see. There is no way that I could do it again today, as today, I am still paying for it.

Last night, I was back to my normal self, I went to the kitchen, to do nothing more than open a few salad pots. Once I had juggled them out of the fridge and picked them back up off the floor, I then  placed them on my lap, so I could wheel them to the counter. As my lap had a clear slope and was covered in velvet, why I thought they would stay there, I have no idea. Of course, they didn’t, I had to pick them up for a second time. Once safely positioned where no more accidents could take place, on a nice level surface, I started to open them all. First two, went fine, the third, landed up on the floor, this time without its container, it was still in my hand, the tomatoes, mozzarella and olive oil were all over the place, including over me. Nothing annoys me quite so much as wasted food, especially, when I had splashed out on what was supposed to be the last treat of the holiday season. I had to call Adam to rescue me this time, there was no way I could clean it all up, as I couldn’t even move my chair, without squashing mozzarella balls into the floor. My growing exhaustion was beginning to show, no matter how determined I was to keep going, my body was screaming stop, I had to leave Adam to complete what was supposed to be dinner before I ruined it all.

That is life with chronic illness, one day, you can appear almost normal, the next, you’re can appear totally useless. I know appearances have almost nothing to do with anything, but when you can pull something off, in front of those who matter to you, well you feel good.The things that suddenly become enjoyable and noteworthy when you are ill, are often the simplest of things. I know that most 11-year-olds could have done what I did on New Years Day, yet I am still left feeling proud, for doing what once I could have done without thought. Life takes on a whole new perspective, we become proud of doing almost nothing. Excited, about what most see as a chore and elated, despite getting those tiny things wrong, well it was only an egg. But then yesterday, a simple carton totally defeated me, not once, but over and over again. This world we live in is truly measured by things that make little, or no sense at all.

 

Please read my blog from 2 years ago today – 04/01/2014 – Getting to me and you

It appears I am having one of my do anything else I can find to do rather than what I should be doing. I woke early this morning, just before 6 am in pain and bursting for the loo, the second was easily…..

 

 

In harmony with ourselves

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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…..

Words to live with

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It’s been a tough week, I’ve spent all of it locked in a battle, which, although I don’t intend it to get the better of me, it is wearing me down. Those who know me well enough will have spotted, that something was up. I too have noted that I have been clearly picking subjects, that said little about the now, this very minute. It’s not that I am trying to deny that it’s happening, it’s just I know how tiresome it gets when someone goes on and on, about the same single thing, especially when it doesn’t really change. That’s what makes it such a battle, it doesn’t matter what I do, I am in constant pain from my stomach. See, I told you, it boring. So I’m not going to go on about it today either, it’s more an update, a note to say that it’s now three weeks, since I last had a straight six hours, without the level of pain, that makes me reach out for the Morphine. Nor, have I had a single day, where sleep hasn’t been on my mind, far more than I remember before, two things that I am now convinced are locked together. Tomorrow is the start of week four, I just hope that if I need to make an update, it will be to say, that at last, it’s settling down again.

I’m starting to truly hate that word “chronic”. It seems to have snuck its way into every corner of my life, almost everything seems to be “chronic”. The only good thing, the things that 14 years ago at diagnosis, were then counted as “chronic”, mainly don’t bother me at all now. I’m not saying they are gone, they just don’t bother me. That’s why I say that it’s a sneaky word. What it does, is attach itself to something, then it starts looking for the next step above. It’s not even bothered if it’s the same symptom or something totally different, it see’s it, and it want’s it and just like most petulant children, what it want’s, it normally gets. Each step it takes, well it forgets about the one before, because it’s got a new toy, that’s bigger, brighter and more painful or annoying than the last. I’m never been sure which is worse, pain or annoying. In some ways, I’d actually say annoying is wins that match. Painful, well it can be treated with meds, relaxation and sleep. Annoying, just eats away at you, hour, after hour, after annoying hour. Right now, on the annoying scale, the winner has to be my legs. They died a couple of weeks ago now. Well, I think it’s a couple of weeks, that’s the problem with annoying, they appear and become part of our lives. Days, weeks, or even months pass without count, they just are, before you know it, it becomes part of your life. As I said, I am sure that those things that were “chronic” 14 years ago are still there. It’s just, that they are so much part of me, that I no longer know they are there, or that they are wrong.

We have all heard the classic story of the person who on visiting their doctors, forget to mention, this or that. Well, that isn’t just bad memory. It’s because what some might see as wrong and needing to be fixed, are just so much part of us, that when the doctor asks “How have things been?”, we say “Fine”. It’s not habit or forgetfulness, it’s because this horror story called our lives, is “fine” and “normal”, to us, it is us. If forced, I don’t think there is a single inch of my body, that I couldn’t find something bad to say about, but to me, it “normal”. We aren’t as dotty and as daft, as some think us, we just have a totally different way now of measuring our world. Think about it, how many seconds after putting on your make up, or a hat does it take for you to forget that it’s even there? Well, it’s the same thing, just on a bigger more permanent scale. I have heard so many people tell me that they will never get used to this or that, ask them even just a few days later and there is this moments where you can see in their eyes, that they are having to think. They have become used to it, it has seamlessly slotted itself into their lives.
Not being able to feel anything other than numbness in the majority of my legs, is a normal everyday thing. “Annoying”, but “normal”. Most of the time, unless I am drawn to it for some reason, like it being so intense that it if feels like it has frozen its way right through to my bone, I almost forget about it. It hasn’t gone anywhere, it’s just in a quieter spell, or I am deeply distracted enough for it not to dominate.

It has been such a long time now since I felt what most would call “normal” that I honestly, don’t think I can even remember it. I don’t actually think, I can even imagine it any longer. My body, is just my body, and the things that it does to drive me up the wall, are not exactly expected, as I honestly don’t know what it will do next, but I do know it will do something. Every movement I make has some sort of price attached. Messages from my nervous system are so screwed up and so sensitive, that anything, even just a single breath, isn’t just about air, it is about, what every nerve involved, thinks it feels. A breath doesn’t start and end with the pain from my diaphragm, or intercostal muscles. There are thousands of nerves in that process, from the ones the air travels over in my nose, throat and trachea, to those on my skin that should, just feel material on skin, but often finds sandpaper, fire, ice, and numbness right next door to each other or at the same time. My nerves have been turned up to 11 for so long, that I couldn’t even tell you what 10 feels like, all I know is I often wish I could feel nothing, oddly, though, that something I equally fear.

I doubt in reality that there is anything that my body can do, that it hasn’t already done. Those things I often say are new, aren’t really, they’re just a variation on the theme, but that what “chronic” health is, a variation on good health. Admittedly, it’s a rather unpleasant variation, but it’s one you get used to, no matter how unpleasant it gets. We all learn to live with whatever life throws at us, which is very different from liking it, but we live with it, what other choice do we have. In many ways, I suppose not being able to remember “normal” is a blessing and the reason that the longer we are ill, the less we bother to tell people that this or that is causing us a problem. We’re fine, because what else is there? To annoy everyone by being honest, to make ourselves depressed by dwelling on what can’t be changed? I don’t remember taking the decision that I was “fine”, but I do remember that I decided that I had to accept this odd life as “my normal”, as otherwise, I was simply going to make my health worse. I doubt if there had been a film of my life made as it happened and if you sat and viewed it, that many would reach this point in my life and find anything “normal” about any of it. To stay sain, I had to see it as “my normal”, so it only makes sense that I see my health in just the same way.

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

The last few afternoons I have been dealing with a common problem with a twist, “Google madness!”. You know when you set out to do something incredibly easy on-line to only find out it is a total nightmare! It isn’t what…..

 

 

Who knows

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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…..