Tag Archives: Intestinal spasms

Odd only gets odder

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I woke feeling as though I was sharing the same death as King Edward II. Getting out of bed was total agony, but I had no other choice, clearly, my body was demanding, that I moved as fast as I could. I was in so much pain, that for a second, I hesitated as to if I had enough time to put on my dressing-gown, or if I just had to chance it. The time caught my eye, 10:22 pm, I had only been asleep for less than an hour and a half, it made no sense, but little had in the previous 6 hours, why on earth would this either. 10:22, Adam was clearly going to still be up, so time or not, the dressing-gown had to be put on. I don’t think, that Adam has seen me naked at all in the past 10 years, I won’t let him these days, as my body is such mess after years of illness. Last night, proved just how deep my embarrassment goes, as there was no logical reason to extend my pain for even a second. Once covered all I had to do, was to get out of the bedroom, that was when I woke up, enough, to start questioning the pain and what was causing it. The second my backside touched the cushion on my wheelchair, I found myself holding my breath and unable to let my entire weight settle on it, but there really wasn’t a choice, I had to get to that bathroom and now. Once settled, I reached out in front of me as far as I could, I managed to just touching my spare dressing gown that hangs on the back of the bedroom door, I grasped it, then pulled and the door swung open. A simple trick, but one that saves so much time, as I then have a clear path to escape by, rather than having to perform three point turns, around the base of the bed.

I couldn’t believe it, not only was Adam up, but he was in the bathroom. I had no choice, I had to call out to him and find out when he could vacate the room. Luckily, he wasn’t as I thought in the shower, he was cleaning the room and soon left when I explained my predicament, but only after moving things, that didn’t need moving across the floor. I think he could see my growing distress, so he rushed past me and let me in. Relief was only a moment away, or rather, it wasn’t. There was nothing there, my lower bowel was empty, which made no sense at all. It didn’t make  sense, there had to be, so I took a chance and landed up putting myself through pain, I can’t even describe, but there was nothing, but more pain. There was no doubt what so ever, I didn’t need to empty my bowels. It was only then that I could locate the pain as slightly, by maybe half an inch too far back, to be what I thought. It was a spasm from hell and all my efforts were just making it worse. My desire to return to my wheelchair was getting lower by the second, as there was a certain relief, just sitting with the affected area, in mid-air, but with Adam up, and waiting to get back to his night time chores, I had no choice. I couldn’t even enjoy the cigarette that I lit when I reached the kitchen. There was no comfort, stood, sat or in any position I could create and some of them were rather odd, but, worth a try.

All of this started in the afternoon. I had been making a batch of psyllium pancakes, as I had totally run out, so tired or not, it had to be done. With the first dozen cooked, I had to ask Adam to take over. I can’t actually put it into words just how I felt, even at the time, all I could say was that I felt wrong and I clearly looked it, as from that point, until bedtime, Adam checked every few minutes. It wasn’t as though it was one given area, it was odd things all over me. My stomach was a mess, I knew that as it was producing its all time favourite, pressure on my diaphragm, and that too was tight and making things more difficult, but that wasn’t it all. Almost every muscle felt odd, there was a body-wide and brain filling oddness. All the small things that had ever turned up with any previous oddness, had all arrived at once. I couldn’t swallow with ease my own saliva, but I could swallow a drink without any problems. My throat kept locking, and getting confused between breathing, talking and eating, all the muscles, were moving at the wrong time. It felt as though every extreme symptom I had ever had, were queueing up to take a pop at me. My arms and legs were weak, somewhat rubbery in feel, but as heavy as lead. I had no wish or inclination to do anything and swithered over going to bed, but although physically exhausted, I wasn’t what you’d call tired. My bladder control went wrong around 5ish and I landed up haveing to clean myself down and get changed, none of which was made easy, as my only other clothes were still in the dryer. I know all to well, that once my bladder has failed once, it can and often does, do it again, so I then had a fear of moving, which just added in an extra pressure to how I already felt.8 pm was another clear display of oddness. It was time to take my meds, but I couldn’t. Not because of issues with supply, I quite simply couldn’t swallow them, they just kept getting stuck. I’d get it back up, swallow again and drink like mad, to try and clear it. I thought they were gone and I actually sat and waited to be sure, before going to clean my teeth. As I twisted and reached into the cabinet for the toothpaste, five tablets appeared in my mouth. I didn’t burp or anything like that, it was the way I twisted my neck that brought them back up from the spot where they like to sit. We don’t keep a glass in the bathroom, so I had to once more call for assistance from Adam, which sent him off on another worry line, as to would they just appear again once I had gone to bed. It has happened once in the past, but that one is off the scale of oddness. I was told years ago that I have a pocket in the side of my throat, it’s called an Esophageal pouches. Another one of my oddities, as it’s mainly elderly men that have them, but I’ve had mine for several years now. Most of the time, it doesn’t bother me, but when it starts playing up like this, well it normally keeps it up for quite a while, before it settles down again. I don’t know if I’m talking rubbish, but I think it gets stretched every now and then, and once opened up further than normal, it takes

8 pm was another clear display of oddness. It was time to take my meds, but I couldn’t. Not because of issues with supply, I quite simply couldn’t swallow them, they just kept getting stuck. I’d get it back up, swallow again and drink like mad, to try and clear it, then up it would come again. I thought they were gone and I actually sat and waited to be sure, before going to clean my teeth. As I twisted and reached into the cabinet for the toothpaste, five tablets appeared in my mouth. I didn’t burp or anything like that, I think it was just the way I twisted my neck that brought them back up from the spot where they like to sit. We don’t keep a glass in the bathroom, so I had to once more call for assistance from Adam, which sent him off on another worry line, as to would they just appear again once I had gone to bed. It has happened once in the past, but that one is off the scale of oddness. I was told years ago that I have a pocket in the side of my throat, it’s called an Esophageal pouches. Another one of my oddities, as it’s mainly elderly men that have them, but I’ve had mine for several years now. Most of the time, it doesn’t bother me, but when it starts playing up like this, well it normally keeps it up for quite a while, before it settles down again. I don’t know if I’m talking rubbish, but I think it gets stretched every now and then, and once opened up further than normal, it takes time to settle back again. Last night with everything else, it was just not needed.

The pain that I woke up with, probably, wouldn’t have sent me running to the loo if it hadn’t been for the problems my stomach was displaying earlier. If I had been awake, I might have recognised it for what it was, a spasm. I’ve never had one in that position, a few inches further forwards between my legs, yes, but that far back, never. Just like last nights one, they are a bit like someone grabbing hold of you with a large pair of blacksmiths Nipping-Pliers, then twisting then, just for the fun of it. I have learnt several tricks for dealing with those. The most effective is to make a tight roll from a towel, place it between your legs, and sit on anything that will help to apply pressure, such as the arm of a chair. But nothing was helping at all last night. Last night, I resorted to Morphine and relaxation, slowly relief appeared as did eventually sleep. Today, I feel better, but sitting is still a tentative process. Even once achieved, the shadow pain is a huge comfort issue. On the good side, I feel better, not great, but better and I don’t suppose, I can ask much more than that.

Oh! Just in case, you didn’t quite get the opening line of this post, well we don’t own a poker, nor a real fire to have heated it on. Not to mention, I hope I have never upset anyone baddly enough to have someone wishing to insert one into me. If, you still don’t get it, try Google 🙂

Please read my blog from 2 years ago today – 05/01/2014 – No embellishment, just me

There are days where I spend time just sitting reading back comments from previous posts, often they trigger something that I then want to write about or answer within another post, so in that respect I find…..

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…..

 

 

The ticking of time

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There are so many points in life when you just tell yourself, things will never be the same again. Of course, they are not all bad, in fact, some of them are wonderful, like the day you hear the words you thought you never would “Here you go Mum, meet your daughter”. Clearly as well, they aren’t all as major as that either, even tiny things can make you realise that you have once again, passed one of those tiny milestones, that are scattered through our lives. Some make us laugh, some cry, some are just noted with a sigh and some, well they’re just marked with the nod of our heads and the acceptance that it’s just a point in that process of ageing or another part of the story of our health. Which actually category this fits into, I’m not totally sure, is it just age, or is it more part of my body falling apart due to my health. Muscle weakness is very much part of my health, but the longer you are inactive, well the weaker those muscles get. For a long time now I have been more than aware that my stomach isn’t as flat as it once was, yes that was said tongue in cheek, it’s so far from flat that anyone can see it. A large part of it is clearly the weight I have gained since my mobility left, another, is the total lack of toned muscle to hold everything just where it should be. I hadn’t though, realised just how bad it had become, until last night.

Over the last couple of years as you know, my PRMS has gone to town on my intestine, causing me all kind of problems, most now under enough control that I am more than coping with them. Last night, I was suddenly in pain in my lower right side. Pain is nothing new, but in that exact spot and as intense as it was, was most definitely new. It didn’t matter how I shifted around, change position or anything else, it didn’t change. I had been on my feet a couple of time, during my transition from wheelchair to chair and back again, but even that movement did change it. I knew my bladder was empty, although that didn’t stop my trying again, just to be sure, as I know from experience that an over full bladder can cause pain of all sorts, and not just where you’d expect. When I got into bed I was hopeful, that just lying down would be enough to relieve it but it wasn’t. I had already swallowed a booster pill because of it, as it was honestly that painful. There was little left to do, other than the totally normal thing we all do to pain, poke at it. I have never been that sure why we do such an obviously stupid thing, what on earth do we expect will happen, other than more pain? Anyway, after I settled back down, I took a more considered course of action, of gently applying pressure and pushing upwards on the painful mass. As I was slowing pushing towards my head, it started to slip away from me and settle backwards towards my spine, the pain was gone. A little confused, I started gently feeling around and I worked it all out. Somehow, a piece of my insides had hung itself, on my pelvic bone, the sinking back motion, was it settling into where it should have been all along. It was one of those silent moments, another tick on the list of things my body now needs help with, keeping my insides where they are supposed to be.

I guess it was always just a matter of time, as I have been pushing and pummelling the rest of it for years now. This was something new, but at least I now know if I am in pain like that again, lie down and gently press. The list of things that I have to do to just keep pain at bay seems to do nothing but grow. Lately, I have noticed that I am now actually feeling pain from my mini-spasms. I am used to having loads of tiny spasms a day, normally nothing more than an annoying tightening of a muscle anywhere on my body. The major ones don’t happen daily, but these mini ones, they are often just seconds apart and if I am honest, are now just part of the background of my life. A few months ago, I started to feel the odd one was producing an ache to go with it, others were showing themselves with a tiny burst of heat or a sudden stabbing pain. They still didn’t bother me beyond being annoying, but they too are starting to show themselves more and more. I don’t think that there is an hour now that passes without my having to sit and gently massage or apply pressure somewhere. I doesn’t bother me on the pain side, but it is one of those things that’s eating into my time.

I don’t think, that there is anything that my body can do to me, that upsets me more than if it finds a way of eating time. If I get a sudden bad spasm, well it’s over and done within minutes and my day goes on. You could say the same about the tiny ones, but it is the accumulative impact that is annoying me. Time to me is so precious these days. I have had to get used to the fact that I need to sleep so much, but it leaves me with limited time. It doesn’t matter what my PRMS has done to me, I have dealt with it with a smile on my face. Yes, occasionally, there has been the odd curse, but overall, I’ve just got on with it. To be honest, that is why my memory frustrates me so much. I waste so much time, having to repeat journeys, back and forwards to the kitchen three times when it should have been done in one. It is more than annoying, it’s enough to get me angry. I have always hated not having the time I want in any day. That is how I landed up years ago, just sleeping just 5 hours a night. I saw it as such a waste of time to sleep for even a minute, more than I actually needed. You can well imagine how I feel about the days when it’s 13hrs plus. Even my straight twelve and a half seems so ridiculous, but there is nothing I can do about it. I have never understood people who say they get bored, or they have nothing to do. How can anyone have nothing to do? I am convinced that as they are putting me in my coffin, that I will suddenly sit up and say “Just a minute, I have this or that to do first”.

Every day is too short, which is why, I am fighting so hard against something I think would actually do me good, getting more sleep. I can’t help wondering if the reason that I am finding so many things a struggle just now, is quite simply because I am tired. As I said yesterday, I could with ease just fall into bed and stay there. It is tiredness, not fatigue, I know the difference. If it were anything else, I wouldn’t actually sleep every single time I lie down, within seconds. If I wasn’t tired, I would just lie there. Like everyone else on this planet, that does happen occasionally, but they are so far apart that they aren’t worth mentioning. I have to restrict my sleep by setting alarms as if I didn’t, who knows how long I would actually stay there. It is one of those balancing acts, one that is so finely set and has worked for me now for about 5 years. I accept sleeping as I have just enough hours awake to be able to have a life. If I change that balance, then something else will have to go, but there is nothing, that I am willing to let slip from my fingers. Somehow, sleeping even for half an hour longer, would feel like a defeat. Like someone had ripped part of my life away and I would be left stranded and bleeding. I hate this illness. My current plan of action, well it’s to push on, to do what I always do and just hope that it sorts itself out, but I know that I can’t do that forever.

 

Please read my blog from 2 years ago today – 06/12/2013 – A scratch too far 

My bank has sent me this silly little thing they call a token, it’s about the same size as a credit card and looks like a calculator, but there are no plus or minus symbols. I haven’t been to their site yet….

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…..

What is going on?

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I’m tired this morning. That feeling of heaviness that makes your entire body just want to collapse and give up. It’s a tired that leeches all warmth, even when you sit in front of the fire to eat your breakfast, you’re still cold. Ten minutes of direct heat and the result, a warm front and a freezing back with nothing in between, and within seconds of moving, freezing again throughout. I didn’t sleep well last night. 4 am, when I woke desperate for a pee and feeling a pain I know all too well, that one that says somewhere in the next 12 hours, I will be moving my bowels. Why do they have to go through such an aggressive announcement period? Quite honestly, I don’t need more than a few minutes notice, just like everyone else in the world, but that would be too easy for my body. No, it has to ruin the one thing I need the most, sleep. Three and a half hours of lying in bed with only fitful sleep is enough to bring me right down the next day. Right now, despite the fact I crashed my way through the house in a desperate dash to get to the loo, once more proving that filing the top off my scab, has made it safe. Or the fact that I have had a meal and done all I can to make life right, all I want is more sleep, hours and hours of sleep. I may not run my life on a tight minute by minute routine any longer, but that doesn’t mean I can throw my day out the window, and just head back to bed. If I did, then the whole day will be a nightmare, followed by a night that wouldn’t be much better. So I do the sensible thing, I put up with the not so nice, to avoid the totally horrid.

This is the draining bit, the part of all chronic illness, that gives it, its bad name. Those days that often turn into weeks of feeling no more than half alive. I don’t write about them that much, as they are the drudgery of illness. Those parts, that none of us dwells on, as if we did, we would see no point to any of it. We brush it to one side and look for the good, even finding it and bringing out a smile for those around us. But inside, deep inside where it really matters, we are drained. To me, it is where life gets scary. It would be too easy to give in and to climb into bed and hide, in the hope that it will pass. No one out there, not even Adam, would blame me and that is even more scary. The world would allow me to wallow, in the mistaken belief that my health had reached a point where I had to stop and rest. The truth would be, that I was taking advantage of a situation and by doing so, I know that I would open myself up to feeling worse and worse. I don’t believe in this concept of fighting our health, but I do believe in not just giving in to it. Some while say, that it is a very fine line between the two, or that I am splitting hairs when I separate them, but it is an important difference. Fighting to me, implies an active aggressive act, something that I don’t have the slightest belief works. Aggression is a pointless response to anything that is bigger, stronger and more aggressive than you will ever be. It makes far more sense to stand your ground, work around it, with it and at times, even give in to it. You don’t beat a bully by becoming one yourself, any more than lying down and letting them beat the living daylights out of you, will stop them from coming back and doing it again. My body got the upper hand last night, leaving me feeling like death warmed up, but that doesn’t mean it has won, I’m still standing and I don’t intend to lie down.

Sitting feeling like a zombie isn’t a good idea either. For me, the only way that I have found that works and gets me through days like this is to keep going. It’s counter-intuitive, your tired, but you push yourself to do everything that you normally do. Even listing extra jobs, ones that don’t have to be done today, they could be put off, but by adding them to your to-do list, your plays the phycological game that illness really is. It is a constant case of outwitting it, rather than outmaneuvering it. By making life as close to normal as ever, there is just a chance, that you can jump your way out of the pit you are sitting in. I probably won’t have my shower this afternoon, but by telling myself that I will, well it means I have to keep moving, just to make the space required. If I slow down now, allow myself to just sit and stare at everything around me, or even just the screen, it won’t happen. I could be that zombie that wants to take over, I could sit here and type a few words here and there, eventually making my way to the end. Or I can kick myself up the backside and I can push those words to appear and my fingers to run, not dawdle. I usually land up somewhere in the middle, but that better than landing up still staring at my unfinished post an hour from now.

It is getting harder as time goes on, to find that inner strength to push myself. As I said the other day, my routine has been trimmed and trimmed and trimmed again. As there is a difference between the odd bad day, and a constant draining of life that doesn’t refill. You can’t push forever, that just doesn’t work any more than fighting does. Recognising which is which is hard. I found it almost impossible at first, and I probably did push for too long on occasion, but I did one thing right, I learned. Just as I told the MS nurse when he was here the other day, I know the point were outside help isn’t far away, but it’s not here yet. Neither is the point where I once more have to adjust my life again, but I have recognised from the last week, that I may need to start thinking about it. My body is screaming at me more and more that it just doesn’t want to play my games and the ones my illness is offering to it, seem like far more fun. Oddly, it is lunchtime that has reinforced those thoughts. The fact that I am not only content to stop and take a break, but happy doing it, is screaming at me. I knew that when I found myself within two weeks, mentioning it again. As you know my writing is more mental vomit, rather than thought out and considered facts. I sit here, turn the tap and brain flows out onto the page in front of me. Because I write that way, it all to often tells me things that I hadn’t either noticed or consciously considered. It threw it into my writing and has activated a train of thought that is clearly going somewhere.

I think I need more rest, not more sleep, but more rest. Time to just do, to be brainless and motionless. Time to relax. My body is forcing me to slow down in ways that I hadn’t expected. I thought that the next sign would be just like all the others, that I would go through a spell of being drained and washed out and never completing my day. That I would then like all the times before just trimming my routine and going on doing the same things as always. Suddenly, I have a need to do something different. To open up a new part to my daily life, but I don’t have the slightest idea what. I can’t spend an hour a day sitting in front of the TV eating. That would be disastrous in so many ways. My wheelchair has pushed me into making changes, ones that I wouldn’t have even considered without it. I am even finding an odd pleasure in my shorter breakfast break and my two 15 minute drug routines. I am at a loss as to what my body and mind are trying to tell me. I can’t stand just sitting around doing nothing, yet it seems to be what my body is responding to best and my brain, is trying to push me into doing. By being forced into doing things differently, I am finding physical and mental responses I never expected. I don’t have the slightest idea of where this is going, I guess time will tell.

Please read my blog from 2 years ago today – 09/10/2015 – Searching for the simple and normal

I made the single most horrible mistake the other day after my shower, I didn’t wrap the towel around myself tightly enough and I had the misfortune of being in front of the mirror when it fell away from my body, resulting in my…..