Get me out of here

I want to run, just run and run until my body collapses, but how do you run, when you can only walk a handful of steps. I’ve had this feeling so many times in my life, and I can’t truly tell you the first time it appeared, but I was young, very, very young. I suppose we all want to escape at times, to just leave where ever we are, not forever, but just long enough to escape life, all life, until our bodies feel nothing, but, the freedom of honest exhaustion. It wasn’t until I was in my mid-teens, that I actually had the independence to just shut my front door, and run out into the dark. I don’t know why, but it’s usually at night this comes over me, at a time when most wouldn’t even put a foot outside alone. When I moved live to Glasgow city center, I used to run from my home to the Green, it’s just a large park, and it wasn’t that far from my then flat. A wonderful space filled with grass and trees, in total contrast to the grey buildings of the old city, and the steel and glass of the modern. I liked it there, it was silent and empty. I could always find somewhere I could sit in silence and recover enough, before, I dragged my tired body back home. Several times on warm summer nights, I have actually slept what remained of the night right there in the park, curled up under a tree. Depending on the tide, I often listened to the Clyde as it flowed over the weir, rarely did I see a single other living soul. When I told people what I did and where I went, they thought I was mad, but you’re only mad until other try it. I wasn’t any madder than one of those joggers I often saw, but for me, this had nothing to do with getting fit, just getting as far, and as fast as I could, away from where I was.

It doesn’t matter how many times I have set out, running until my lungs felt as though they would explode, I never got rid of the feeling, but that exhaustion, was somehow, my freedom. You see, you can’t run away from yourself, or even most of the situations you find yourself in, but when you are so tired, so tired that your body takes over and demands sleep, then you’re at least free for a while. Today, I so want to escape, I want to be anywhere but here, right now, in this body, as I feel so bad. I can’t believe the way that this new drug is messing with me. I thought last night was bad, but this morning has been bizarre and so hard to get through. Hence, here I am starting tomorrow’s blog early, as what is going on is so intense, I don’t want to miss how it feels, or forget what it’s doing to me. I thought that it would be gone when I woke, after all, it was 12 hours before that point, that I actually took it, but it wasn’t. Yes, it was less, but it wasn’t gone. I still felt spaced out, unsteady and muddled, even my eyesight was wrong, it was as though whatever I focused on, was all I could see, anything on the peripheral was excluded. I don’t understand how this drug seems to concentrate everything, but it does. It is somehow making everything intense, everything is sharper, from vision to sensations. Something’s, like eating, are supplying what I can only describe as a sensory overload. Flavour, texture, movement, balance, they’re all different, they’re all sharper, brighter and fixating. I’ve never known anything in my life like it and the fact I want to run, tells me, that every part of me doesn’t like it, I want to escape, but I can’t.

By lunchtime, I was feeling just that little bit better, more myself, to the point that when Adam phoned, I was able to tell him what had been happening to me. I wouldn’t have done that if I hadn’t felt the worst of it was over. Even when I did, he was offering to come home, but as always he was missing the fact, that I was feeling better. It took some time to convince him, that I really didn’t need him here, and I was now able to cope. I also decided at that point that I was going to go ahead with taking them that night. Even though I had said earlier that I would, I had honestly had my doubts. Part of me doesn’t want to feel any of this again, others are telling me that it has to be worth it, it has to be better than the way things have been. Surely my doctor wouldn’t have put me through this for nothing. So I’m resigned to another two days at the least, then I will think it through again.

Today: I took the Duloxetine again last night. Trust me, I didn’t do it with any sense of joy, it was closer to dread, but, I have to say that things are a lot better this time, Instead of life being intensified to 200% of everything, I’m closer to 150%. It’s not right, but it’s better. When I went to bed, I still went through that rather, dishearting experience, of diminishing right down to nothing, but at least, I didn’t take so long to reach sleep. In fact, the worst part of the night was when I woke for my nightly jaunt to the loo. I woke to find that my entire left side didn’t want to move. It wasn’t paralyzed, it was more as though none of that side had moved at all since I lay down, and was, therefore, set in that position and was unwilling to change it. I was only out of bed for about 15 minutes in all and when I returned to bed, there was still no change at all in the way it felt. Movement had changed nothing, it was sluggish, even unresponsive in it limited actions. When I laid down again, it felt as though I was returning to some kind of mold that I was slipping back into, and half of me, gave an almost audible sigh of contentment.

This morning, I no longer want to run. I’m not exactly singing with joy, but, I’m not that far from myself. The biggest change, well, that’s simple, I’m not scared of taking tonight’s pill. Yes, I can admit it now, last night I sat in the kitchen holding my pills in my hand, but all I could see was the new one, and I really didn’t want to take it. I had to throw it into my mouth and swallow quickly, as I was sure that if I didn’t, it would either stick in my throat or, I would chicken out. I am now hopeful that when I take it tonight, that I will be better again. It’s just a matter of wait and see. Part of me is wondering, if no matter what happens, I should call my Doctor on Monday and just have a quick word with him. This is so alien to me, but I just want to know if this is normal in any way, or if, in his opinion, I should stop it straight away, or perceiver. There is one big change, yesterday, I spent most of the morning feeling wired, followed by a gentle lessening. Today, I was still mildly spaced, but it hasn’t been followed by a normalising feeling, rather than by tiredness. I have right now, a great desire to just go to bed and have a good long sleep, something I haven’t done during the day, for over a fortnight. My lengthened nights sleep has had the desired effect, my afternoon nap hasn’t been needed daily. Today, that need is back, and it’s not even lunchtime. Hopefully, tomorrow, I will be able to, at least, think about something else, other than just how bizarre I feel.


Please read my blog from 2 years ago today – 10/01/2014 – A problem to think about

Last night I was dying again, I was simply lying there waiting for it to happen but as always it didn’t. I don’t know what triggers that feeling, what it is that makes you totally believe that you won’t wake the next day……




Lost and in need

I did something this morning that I can only ever remember doing once before in my entire life. The alarm sounded and I turned it off, threw back the covers and went straight back to sleep. On the good side, the last time I did it, I went back to sleep and was 4 hours late for work. This time, Adam noticed that I wasn’t moving and woke me again. I haven’t worked for years, and I have nothing other than my routine, to say that I can’t go back to sleep. Yet, the second Adam said my name, there was that huge feeling of overwhelming guilt and panic. I think it is the fastest that I have moved in a long time. Somehow, I made one fluid movement from flat on my back to sitting on the edge of my bed. I think it was pure shock that kept my eyes open through the next five minutes, as I struggled with my clothing, whilst fighting the same exhaustion that has been with me for the last few mornings. I am not exaggerating over the fact that I have had to really fight to stay awake, and just as has been the case every other day, I also had to fight with my wheelchair. Despite having managed once more last night, to rise at around 4 am and travel right through the house, without banging into a single thing. Here I was three and a half hours later, once more, bumping off walls, doors and anything else in my way.

That dragging sleep, makes everything feel impossible. The whole process of keeping my bladder under control until I actually get my wheels through the bathroom door and around the edge of the shower cabinet has been more luck, than skill. Standing up, is a different subject, but the real battle comes seconds later. I have to convince that same bladder that was threatening me the whole way there, to actually do what it should, now that it’s in the correct place. When all you really want is sleep, there is a secondary danger in having to apply relaxation techniques, just to get your bladder to empty. Then, of course, once relaxed and empty, I have to do the opposite. I have discovered that first thing in the morning is never, the time to trust my bladder. With this intense wave of tiredness, I can’t trust it for even a second. Empty or not, it will somehow start dripping, over and over, the second I start to stand-up again. If that wasn’t bad enough, I still have to complete the remained of my blundering journey from bed to PC. There was no denying the relief that I felt this morning when I actually made it to the safety of this chair, one that doesn’t move. No matter how I have searched the parts of my memory, that are permitting me in, I honestly can’t find any stage where sleep has had such a tight hold over me. I have joked before in my life, about still being asleep long after I have gotten out of bed, but this isn’t a joke. I don’t think, I have been really awake, any day recently, much before an hour, or more, after the alarm.

On Friday evening not long after Adam came home from work, I had to leave the living room for something. Much to my annoyance, I managed to just touch the side tables by the door. I did so hard enough, that the crystal lamp made a slight rattle. I was so angry that I actually shouted out loud at myself. I had noted over the entirety of the week just over, that once I am awake, and as long as Adam wasn’t there, that I don’t even touch anything, not even lightly, that I wouldn’t have done, when I was still walking. But if he was in the house, anywhere in the house, it was almost a guarantee that I would make something rattle, or clump as my chair drags past it. I had come to the conclusion that it wasn’t a lack of skill, it was the fact that I became self-conscious. I started to overthink my actions, rather than just make them. From the instance, I shouted that out and got that pent-up frustration at myself, out and aired, I haven’t banged into a single thing. Two whole days, without crashing, rattling or smashing into a single thing. Without a doubt, if I hadn’t been willing to make that accurate put down of myself, that wouldn’t have happened. It is something that I have been very aware of all my life, if we are willing, to admit, to even those who hadn’t noticed, our own weaknesses, that they often then fade away. I don’t know why it works, but it does. Not only, am I sure that my home appreciates it, but it lead to a weekend where I felt, so much better, about a lot of totally unconnected things.

It is partially obvious as to why that is, simply because all my muscles have been far more relaxed. Just that one, small thing, led to my whole body feeling totally different whenever I was on the move. Clearly, not arriving at my final destination, either tense or angered by once more having a string of stupid accident, has meant that overall, I have been relaxed, for nearly the whole weekend. The knock on benefit has been huge. I couldn’t even compare the last two weekends with each other. Part of that was, yes, down to my losing it last Sunday evening, that clearly played its part. But, just not being tensed up physically, has been wonderful. It is amazing how you can be pent up and totally, unaware of it, until, you break it. I had known that I was spending more and more time, just even sitting here, trying to unknot myself. But, I wasn’t putting it all together, something I would have done years ago with ease. I don’t fully understand, why it is that I no longer have that ability to self-monitor and analyse the reasons, from the effects. It is a bit like having a growing mental blindness, where more and more instead of processing things, I either don’t see them at all, or I am having sudden flashes of light. All those normal steps of working out for ourselves what to do next, are missing. Like everything else that is happening to me, I can no longer trust myself to see the truth, or do what is needed. Just like Adam now has to tell me to physically do things, I almost feel as though I now need someone to point out to me, what I am mentally doing or not doing. It’s an odd one, but as I have been working through here in my posts recently, I know there is something missing, I’m just not seeing what, or what to do about it. I just wish that I could lift my skull off and let someone else look inside for what is going wrong, and why. Then tell me how I deal with what my brain is doing now.

I hope that makes sense. As I said, it’s a hard one, but I do know clearly, that things are going wrong in that side of my life, and it is disturbing me. It’s disturbing me, because, for some reason, I can’t find the answer. I’m lost.

Please read my blog from 2 years ago today – 12/10/2013 – Noticing the risk too late

Sometimes things sound so simple, too simple to be honest and that is when I find the danger usually starts. All I needed to do was to get a new pack of tablet out of the cupboard where I keep all my spare meds, from that pack….

Mind set muddle

Sometimes I wake in the middle of the night, not aware of anything in particular other than I am awake. It wasn’t even midnight, but there I was at that second so totally awake, that I honestly felt as though I could get up and start my day. That, though, would have been a seriously bad idea. I lay there for a few minutes, wondering what I should do. Just close my eyes and go back to sleep seemed like the obvious one, but I had a distinct feeling that that was the wrong choice. Nothing else for it then, I was going to have to get out of bed and go on a reset mission. As I started to lift my head from the pillow pain shot through me, there was my reason, my stomach, well more correctly, my intestine was playing up. Although the Psyllium has made a huge difference, it wasn’t by any stretch of the imagination a cure. That intense pain that brings tears to my eyes and at times make me wish I could just curl up and die, still arrive with all the familiar explosive power, just not quite so often. I even get the odd spell where I can go two or three days without anything more than grumbling objections to food, but something was caught and was attempting to rip open my lower right-hand side. My GP says it is a really common place for people like me to experience pain. There is a tight corner at the point where your guts change from the small to the large intestine, pure bad design if you ask me, and who are these people like me? I’ve never met one.

Before I left the bedroom, I swallowed a Morphine pill and held onto my stomach tightly, before completing my move from horizontal, to sitting in my chair. I know it’s not going to burst open and yes, I also know that putting my hand tightly over the area, isn’t going to do anything helpful if it does, but it makes me feel better. I also know, that whatever is sat in that area causing all that pain, won’t be anywhere close leaving me for at least another 5 days, note the at least. So going to the loo wasn’t going to help me in any way either. I just needed some distraction and enough time to break that tablet down and to get it into my system. A trip through the darkened house, followed by a cigarette and then a pee, should have been just long enough. The problem with that was, that I had this odd disorientated feeling swishing around in my head. Almost as though I was drunk. I made it to the kitchen and carried out my plans with no difficulty, the problem for some reason was getting out of the kitchen. I crushed my right hand against the corner of the kitchen unit by the door and tore off the precious scab that was protecting my nearly repaired knuckle.

I don’t know what it is about knuckles, but they do two things with total expertise. One is to bleed and two is to create pain. The bleeding bit isn’t that much of a problem, suck hard then apply pressure, simple, not. Neither can happen without pain, pain that you wouldn’t believe from such a tiny area. Screaming pain and intensely focused stinging, all at the same time. It is a fortunate fact that pulling faces, is just about as good as screaming out loud, as so far, I hadn’t disturbed Adam. So there I was sat in the darkest point in the house, the hall, with blood pouring out of my hand and pulling faces that belonged to a three-year-old, with a similar injury. Turning that tight corner into the bathroom, was pure single handed skill and pure agony. I know that I got up looking for distraction, well I had found it. As they say, “be careful what you ask for.” With my hand cleaned and daubed with Savlon, I headed back to bed, wondering with every push on the wheel, if I could be totally sure that it wasn’t going to bleed again. Cream carpets and sheets, don’t require or suit, blood spatter.

I didn’t wake again until the alarm sounded. It seemed somehow distant and not really part of my life when it did rouse me. I still had that odd swirling sensation that had been there earlier. Unlike when I left the bedroom during the night, morning meant that not just a dressing gown was required. I had a huge struggle getting my pyjamas and socks on. I was so disconnected from life that I found myself fighting every single movement that had to be made. I wasn’t being helped either by the fact that my Morphine must have worn off hours ago and this was clearly one of those mornings, where pain was a component. I can’t remember when I last had such a confusing start to my day. Trousers, legs and socks all seemed to be knotted into a mess I couldn’t unwind. Mind you, that wasn’t assisted by the fact I had parked up with a wheel placed over them. I just wanted to lie down again and hide from it all, but I couldn’t. I had that eternal annoying voice telling me that it was time to get up and I had no choice in the matter, it was that time of day. Over forty years since I last lived with her, and my Mother is still nagging me.

I feel so odd today, I don’t know what is causing it, or even where it is centred. It is one of those all-encompassing sensations, that for some reason, is driving me into wanting to eat. I already have, it didn’t help. Which hasn’t stopped my brain from screaming for food over and over? I don’t even know where in my mind that the idea of food fixing me is coming from, but that is what it is telling me. Eat and feel better. I’ve eaten, breakfast plus 3 bite size flapjacks, but I am yearning for more. Either that or to go back to bed, despite the fact I don’t think I would head into a deep sleep, just a dose. I hate feeling like this and clearly that is why I am coming up with stupid answers to it. I feel nauseous, tired, light-headed, I’d say I feel almost poisoned if I didn’t know better. I’ve never been poisoned so how does it feel? Probably nothing like this, but that is the description my mind has chosen. Years ago, if I had felt like this, I would have just told myself to shake it off and get on and do things. I would have done some cleaning or something to keep myself physically busy. I miss physically busy. To many that must sound like an odd thing to miss, but you quite honestly miss the oddest things as time ticks by. Right now, I wouldn’t miss the pain in my gut. It’s just getting worse, despite the fact, that at the start of the last paragraph, I took more Morphine.

I guess that today is going to be a tough and odd one, not just because I am clearly going to be in pain for the whole of it, but because of the mental mist of illness. You can’t fight these odd feeling, after last night, I’m not going seeking distraction, it will only land up with food and probably more pain. Maybe that’s why I am seeking food, as it’s the only reason I have to leave this room, unless I need the loo, and I don’t. It has been one of the odd side-effects of being in my chair. I have this desire to do. What? Who knows? I just want to do something. The freedom of feeling safe again has brought that need with it. It’s a really stupid need as well, my body would collapse within minutes, it struggles as it is just to get the end of the day. But I want to do, to be busy in a different way other than sitting here typing. I’ve thought about trying some light housework, but despite the desire, by the time I had fetched the cleaning products, I wouldn’t have the energy to do any work. There are never real answers any longer, just more questions and more madness that just trying to apply logic to, is enough to exhaust anyone. I think it is time for me to stop, to use my relaxation system and see if I can rid myself of at least the tension that all this contradiction is causing. Relax, push away the frustration of just being alive. Rest for a while as I hit the reset button and start over again, with a hopefully a different mindset.

Please read my blog from 2 years ago today – 04/10/2013 – Sorting out life but when asleep

I woke this morning to find once more that I can find no real improvement on the last week, this, whatever it is really had a hold on me and isn’t in any hurry to let go. The pain I have had now for over a week in the back of my left lung is still there, not worse but just as it has…..

Lost and in pain

I’m not here today. I don’t know where I am but I just know that I don’t feel connected to myself, somehow lost. I know in the last few months this has happened several times, but I will never get used to it, I guess it is as close to one of my ultimate fears as I ever want to get, my mind so taken over by drugs that I can’t find myself. I don’t blame the drugs for this because if it were them, well I would feel like this always and I don’t. It is though as I would imagine the effect of higher doses of morphine would cause, where your mind is in a cocoon there floating, not quite connected and not quite so lost it can vanish into a dream, just existing in a reality that it has let go of.

I have had to push myself through almost every second of this morning, constantly aware that I am not connecting with my actions, just on auto pilot and even then, an auto pilot someone forgot to program correctly. Every few minutes from nowhere I find a tear slowly running down my cheek and as long as I ignore it I can hold at one, stop wipe it away and then the flood for a few seconds before I can stop them again. The madness point, as always, is that feeling I should be totally somewhere else, not just in place but also in time. As I said the madness point as what else can explain a feeling so totally alien but so totally at home and logical in its depth. It’s not as though I can actually just shake it off, I’ve tried that a million times, just doing something that will pull me back, snapping me out of this place and make me feel whole again. Unlike if this was caused by medication, I can’t even balance it by saying I’m not in pain, as I am, just as I always am. It doesn’t happen often but this is now clearly part of whatever is happening to my mind, I can no longer just put it down as a strange one off that hopefully will never happen again, it’s happened too often now to just do that. Just like I can remember flares in the distant past I actually do have some memory of this feeling being around at times in the past as well, I can’t pin them to a time, it’s more that I have no feeling of newness, it is familiar revisiting on many levels.

Just like I get days when I have bad pain that I can pinpoint exactly inside my skull, I can’t help wondering if this inability to connect, has something to do with a lesion appearing or growing. If you read information on MS it doesn’t actually link directly anything to the lesion other than of course ultimate effects of them, but if you Google “brain lesions” the information is very different and much of it causes that light bulb moment of “I know that!”. Of course, the ultimate questions I want answered aren’t there, when will the ever be? To me the simple questions are always the ones that no one has answered, I can find as much complex stuff out there but the simple yes/no answers that would put my mind at rest, are never ever there.

Things weren’t right yesterday, most of it I put down to the nausea, although kept under control by the meds, I still felt sick most of the day. Even then I was feeling a little cut off from life but nothing compared to today, but just as I said yesterday, I could so easily just go to my bed and lie there, not sleeping just doing nothing at all. Anyone who has read for a while will know that this isn’t the normal me, something I hold onto, as long as I know that one fact, I am still here.

I know that when I went to bed yesterday afternoon and last night that I found myself having a lot of difficulty breathing, this though was something that I could put totally down to my MS. My intercostal muscles were locked within seconds of lying down, I had hoped that by altering my mattress position that I would find a point that eased it but not so far. I just wish I knew what it is about lying down that triggers them, not only the intercostal muscles react, but also my lungs feel as though they are turning to lead. I have had no peace what so ever from my diaphragm now for months, regardless of position, there is something about this part of my body that my MS has taken a great liking to and has no intention of leaving them alone again. I can’t help wondering if my shallow breathing at night isn’t playing a part in how I have felt in the last couple of days. It’s a thought but I have nothing to prove it in any way.

For now, not only my brain but my arms have had enough of typing for today, I am so tempted to take one of my booster tablets just to deal with it, but the thought of adding more morphine when I am already so disconnected and lost, well it is just not going to happen, the fear of totally losing it, is just too great.


Please read my blog from 2 years ago today – 10/03/12 – Flare day 5 

This morning I was on the phone to a friend talking about his drum kit, after a few minutes I have to say my mind started to wonder, although I was in the music business years ago I was never really into the finer details of different types of cymbal. For the first time in the past couple of days I found myself grateful for an extremely painful spasm. As he started to discuss the fact that his snare drum was made of brass, tears……