Please let me be human

Last night, I found myself snappy with Adam, which is a truly rare thing. He realised within seconds of being home, that I was once again exhausted and that I wasn’t in a responsive mood. It’s not common for me to be like that, normally, it doesn’t matter how I feel, I manage to put on that happy face and make light of it, but not yesterday. Everything about yesterday was extreme, hence yesterday’s blog. I quite honestly didn’t know how to deal with another minute of that day, I was done before it even started. Every element that I have spoken about over the last few weeks, for some reason all appeared together and it got the better of me. I can cope when it is just the constant pain or the endless tiredness. I can get through any day where they are at levels where I can make light of them, or even if one or the other is off at an extreme, but yesterday, they hit me like a mallet, and there was no escaping either. Not even my Morphin boosters were doing their job, quite to the same extent as normal, in fact, nothing was working as normal. For me to be off hand with the person I totally adore, was just the final symptom of a day, that was filled with extremes.

Adam, like so many people when faced with someone who doesn’t want to communicate, who is clearly having a tough time, is to make light of life. To talk twice as much as normal, crack jokes, tell stories and constantly try to get a positive response. When that failed, he then started to ask questions every few minutes. “What is it that’s so wrong?” “Can I do anything to help?” “If I did this or that, would it make things better?” “Have I done something to upset you?” Inside, I was screaming “Please, just shut up”, but the words always come out as “No there’s nothing you can do, I’m fine”. Unfortunately, I was very aware, that my tone was saying anything but. It takes a lot for me to lose my patients with Adam. Like any husband, he can occasionally drive me up the wall, just as a wife, I am sure I also do to him. Even at my worst, I rarely feel as I did last night, and I knew totally, that it was all coming from me, not anything Adam had done.

It can be hard at times to put aside my health, and to try and be the person I am, and I always should be around him. When you have lost all your energy, when your patients with life is thin, even those we love can turn into another annoying blue bottle. They don’t mean to, and we don’t mean to feel that way, it’s just the way it is. Normally, those days are well spaced, but recently, I have found myself there too often, just wanting to swat, what are meant to be loving actions. Adam isn’t stupid or blind, in fact, the other day, he himself said, “Shut up Adam”, then mumbled his way back to the settee. He had come up here just to make sure all was well and to give me a kiss, he didn’t manage either. Too frequently lately, I have pretended that I was busy, engrossed in what I was writing or the game I was playing, not because of him, but because I just couldn’t cope with anything or anyone else at that very second. I feel guilty for it, more so, because I can even explain what is going on to me, far less to him.

Physically, there are two things that right now are getting to me. Firstly, my lungs. I am getting so much pain, not just the normal intercostal spasms, but a separate internal tightness. A times, when I take a breath in, there is pain right in the center, exactly where the bronchus splits in two. My right lung is the worst, as I have areas that are really painful all the time, others that spike out of the blue, sometimes in line with taking a breath, others when I move. All the inhalers in the world won’t help me, as this is muscular, this is all coming from my PRMS. I loose my breath at times, but more than anything, it is simply restricted. Secondly, once again, it’s my stomach. This one I really don’t get as with the increase in the Psyllium, I am actually going to the loo every three days, which is wonderful compared to how it was. The pain, though, is at times off the scale. It’s in the same area’s as normal, but far more intense and lying down or sitting, there is no relief. Psyllium, unlike laxatives, doesn’t cause spasms, it’s simply a bulker and one that adds lubrication. This pain is from spasms, so once more, that means this is my PRMS. Add in the rest of the pain that is spaced out around my body and clearly, the pain is getting to me badly. It’s not constant, but in the last three days, have been exceptionally bad. The pain alone is exhausting, but it’s not alone, as they way I feel right now, I know something else is at play.

If I could get the pain under control, them maybe, just maybe, I might feel better. I say maybe, as I am so used to living with pain, that I can’t be sure, that it is causing how I feel. My Gabapentin increase doesn’t seem to have touched these areas, I’m sure it has, but it just doesn’t feel that way. What it has done for me, is to turn down the pain levels throughout the rest of my body. At first, I thought, that the turning down of all the background rubbish was just allowing me to feel this all the more, but over the last couple of weeks, it has clearly been increasing. My Morphine boosters turn it all right down, but if I take too many in too short a period, I start having vivid dreams that disturb my sleep. The less sleep I have, the more tired I am and the worse the pain gets. Therefore, I try not to take more than one or two at a push in any 24hr period. Yesterday, I put off taking that tablet until 6:30, the time I close down my PC and we settle together on the settee for the evening. Unfortunately, they may deal with the worst of the pain, but they don’t stop the spasm and even without severe pain, they can be incredibly uncomfortable, and just as tiring. By 6:30 last night, I was exhausted, so tired that my brain just could deal with even the TV if I’m honest. It clearly couldn’t deal with Adams attention as well.

When all of this started a few months ago, I never thought then, that it would get this bad. The more I think about it, and the more I analysis what I have written over that period, the more convinced I am, that something bigger is going on. I can’t help thinking, that the increase in pain, and the growing exhaustions, are symptoms, rather than the conclusion. If I could just deal with those symptoms, then I might find out what is behind them. I have always told myself, that it doesn’t matter what my body throws at me, I can deal with it. I still believe that. What I can’t deal with, is the way it is affecting me when it comes, to how I’m treating Adam. I know, that he doesn’t let it affect him, he understands that it’s not really me, but that just makes me feel worse. He doesn’t deserve to come home to someone who it crotchety and frequently downright rude. As he keeps reminding me, “Marriage is for in sickness and in health”, what he conveniently forgets, is that we have been married for nearly 16 years and I’ve spent 13 of them sick. I don’t want to spend whatever time I have left, short tempered and snappy, but I don’t know what the answer is.


Please read my blog from 2 years ago today 04/02/2014 – Making things better! FOR WHO??

After years of getting frustrated by not being able to pick something up or dropping something without warning,I now have a new and unexpected addition. I had been using my E cig and was ready to go to bed…..






Don’t dismiss anything

Tiredness is a funny thing, the way that one second I can feel fine, and the next I want to crawl into my bed and never get out again. I know for me that it isn’t just a need to sleep, this kind of tiredness comes from a fatigue. Fatigue used to just be that feeling that my limbs not only couldn’t do anything, they were quite simply dead and I needed, no, had to rest. Over the years, I discovered that sleep wasn’t the answer, it helps, but it isn’t the answer. I could sleep forever, but fatigue doesn’t go until it is ready, it just builds and builds. The longer you live with it, the more it grows, somewhat like an ever rolling snowball, it picks up just the little bit more every day. I know that I have written a post before about the difference between tired and fatigued, and if I say so myself, it was a great post. So why return so soon about something that was written well and describes it fully? Well, because, that post was about that dragging fatigue that holds onto not just our bodies but almost our souls as well. This is about muscle fatigue, something quite different, but without a doubt, rolls over into the more major form.

Recently, I have been finding myself floored but unable to sleep and I don’t remember that happening for years. I still sleep perfectly at night, but it is the afternoons when I now often find myself lying there in a half world. I am on the cusp of sleeping, completely relaxed, but I am totally aware of every inch of my body. I can feel each part of me, even those that appear to be missing and all of those that have their own individual sensation.  My body is alive with areas that are numb, others tingling, some that are both and other that are causing me pain. There is nothing there though that is enough to stop me sleeping, but it just doesn’t arrive. It has nothing either to do with my thoughts or an overactive brain, mine is rarely that, but there I lie, with a completely exhausted body, that is craving to just be allowed to shut-down. In the past, I have tried using relaxation techniques against fatigue with little positive effect. Not surprising really, as fatigue, has nothing to do with anything one would call normal, it is far more than tired, far more than muscles that have just been used too much. Neither sleep nor relaxation seems to be a cure for fatigue, it is more a sticking plaster that lets you forget about it for a while.

A few years ago, if you had suggested that I should go to bed and just lie there for an hour or more. doing nothing, I would have refused point blank. My refusal would have been heartfelt, as there was nothing I would have found more difficult, or more horrific a thought, as wasting an hour, lying around being bored. Even if I had tried to, the boredom would have driven me mad in less than fifteen minutes, I would have been up again. So for me to be able to say, that I can now do this with ease and that I actually enjoy that hour of lying there doing nothing, something major has to have changed. It is the absolute truth, that nothing that has happened to me in the past year has surprised me more than this, but there it is, I can now do it. Clearly, I have made a discovery, something that has allowed me to change so dramatically, and yes it does have something to do with fatigue. I wouldn’t go as far as saying that I have found a cure, but I would go as far as to say, I have found a real sticking plaster that soothes and doesn’t just distract. I’m not going to lie, I wasn’t looking for something to help, I was just looking for sleep and I was working through my relaxation technique in the vain hope of finding sleep, but I found something else.

I have to admit that I have been holding back on writing this, because it does sound kind of silly, but it has helped so many times now, that I feel it’s only right to share it. I had gone to bed one afternoon and my hands were really bad, painful and heavy the typical fatigued muscle feeling. The second I was settled in bed, they started that intense tingling that is just one click away from painful. I had already earlier in the day been sat at my PC, stopping every now and then to massage them, as they felt so knotted and tight. For me, massage is something that rarely helps anything, other than spasms, but it is one of those instinctive actions that you find yourself doing, whether it works or not. When I couldn’t find sleep, and my relaxation system hadn’t worked, I found myself lying there cursing my hands. They were so alive with sensation, that I was sure they were what was blocking my sleep. I decided to work on them again, but this time, instead of just mentally relaxing my whole hand, I went finger by finger. When I reached the ones that hurt the most, I added in what I can only describe as mental massage. In my mind, I imagined gently massaging the muscle and adding rays of warmth. I could think of no reason why it would work, it was intended more as a way of keeping me from getting up, as I knew I really needed the rest, even if I wasn’t going to sleep. To my surprise, when I had completed my entire left hand, the level of complaint, honestly seemed lower, not gone, but a bit better. There was a marked difference between the two hands, that hadn’t been there before. I did the same exercise on my right hand with the same result. I had purposely done all this very slowly as I was time filling after all. When the alarm sounded, I got up and thought no more about it.

Usually in the evenings, I find my hands incredibly painful, especially since I have been in my wheelchair. That evening, yes, they were still painful, but there was an improvement, I didn’t link it at all, until a couple of days later, when the whole thing was repeated, as it has been multiple times since. I decided to test it out on not just painful muscles caused by use, but highly fatigued ones, it works with them too. I have analysed and worked through the whole thing and now, I don’t bother with the imagined heat anymore, that I think was just silly. What I have done, is to have come up with what I think the reason is, and the system that makes it work. I use my relaxations system frequently, so I can now use it with speed and efficiency, for going to sleep. By slowing it all down and really concentrating on making sure that every muscle, rather than just whole limbs, are as relaxed as they can be, not just enough, but totally, is what is reducing the pain. I am more than aware that the technique I use, is used widely, and I am sure that many who use it, like me, has become skilled at relaxing at speed. I suggest strongly, that you slow it down as like me, you might actually be missing a benefit that is there waiting. It is a long way from a cure for fatigued muscles, or that dragging fatigue that goes much deeper, but it is a help, a really good amount of help that makes it worth well. So much so, that I now go for my nap, not caring if I sleep or not, as that hour and a half, is of benefit either way.

I am so convinced of it’s benefits that if I find myself aware of aching muscles during the day, that is now my first stop, rather than just putting up with it. It isn’t a miracle cure, but it does make life just that bit more comfortable and that to me is worth the time I lose. In the past couple of months, all I seem to have done is to slow down everything that I do, to take more rest, relax more and generally, take life at a smoother slower pace. Every time I have tried this in the past, it just hasn’t worked, I guess that I just wasn’t ready for it to, well it does now. It appears, that no matter what it is, just because something hasn’t worked before, isn’t a reason to say it doesn’t work at all. I would strongly suggest that even if you have tried any relaxation techniques in the past and dismissed them, try them again and even again, you might be surprised by what you discover.

Please read my blog from 2 years ago today – 30/10/2013 – Avoiding depression

I have always been someone who likes to live life with challenges, to have lists of things to achieve and to work on, not for money, praise or anything else, other than self-pride. I have lost count the number of times in my life people has asked me….

Changing sleep

I woke this morning at last without the feeling as though my insides were trying to explode straight out the front, sides and back of me. I am a long way from comfortable, but there is a huge improvement from last night when just taking my meds, followed by 8 olives which I decided firstly to take away the taste and secondly because I love them. I couldn’t believe that withing 20 minutes I was hit by another wave of pain so bad that there was nowhere more comfortable than any other, things may not be perfect, but they are better despite my last hour of sleep being rather fractured and fitful. With my stomach settling, it is always at this point that I become more aware of what it has managed to upset in its zest for making my life hell. I doubt it is any surprise that having managed to make the pain reach higher than ever before, that some of that pain is once again round the side of my breast and up into my right arm pit. I don’t exactly understand it, but it is an area that always flares up when my stomach is bad, the additional fact that pressure reached that far, made it a certainty, just as the a nausea that followed taking my meds this morning. One of the odd things I often find, like right at this second, when I feel nauseous, I often seem to start to yawn, I don’t feel overly tired, yes I would be happy to lie down, but sleep, I doubt it. Even with all that, I still feel better than I did yesterday, which doesn’t mean that I just like yesterday, bed sounds like a wonderful place. I didn’t in fact spend yesterday in my bed, as often happens I started to brighten around lunchtime, although I ate nothing, I did feel that bit better and in the end only had two hours sleep in the afternoon, I just wish that I could actually wake up feeling good one day rather than a slow rise to my best then a downwards fall, from that point on.

Going to bed is often not the relief that I crave as I lie there with these horrid sensations all over my body, many of them are quite upsetting and worrying, but I have learned that they mean nothing and just seem to be something that my body does. I can say without a doubt that the oddest, is the one that takes over the skin on my face. It starts as just a tingling that at first is confined to my nose, slowly spreading from there over my lips then the rest of my face, then suddenly it wipes to a numbness, within which it starts to feel as though the skin is actually sliding of my skull. There have in the past been several times that I have feared that I am having a stroke as it often happens on just one side, the only logical explanation is what we see happening when someone does have a stroke as one side of their face will sag, so the fear is understandable, especially when you add in things like the thumping rushing blood that I can hear inside my head, neck or ear. I can remember years ago actually getting up to look in a mirror and double check that I am in fact, as well as I believe myself to be, after you have checked a few times you learn it is nothing more than just sensations. It also took me a long time to realise that things like my arms and legs vanishing and appearing to be in positions that were impossible was yet another game that my nervous system just liked to play. When you get spasms in a foot that doesn’t appear to be actually connected to you any longer, or you can’t find anything apart from a shallow breath as your rib cage and diaphragm are squeezing the air out harder than you can pull it in, you find yourself fighting a terrifying battle. Terrifying it might be, but don’t forget you are trying to go sleep, all these things have to be either ignored or rationalised if you are going to shut down and disappear for a few hours. It has become quite an art, one that has taken many years of practise, working on finding those muscles that are tensed and letting them relax totally, shutting out or down the pins and needles, using your mind consciously to put your body into a state where sleep will just take over.

On a good night, I can be asleep in seconds, on a bad one it can take time, but it is at night it always seems to happen with a modicum of ease, which when you consider that I often don’t actually feel like sleeping, is kind of odd. I am like every adult on this planet, I don’t always feel tired enough to sleep some nights, or there might be a good program that I have been watching but is ending late that night and I want to see the end off, but every night at 9pm, I head to bed. I do it because I know I have to have at least 10 and a half hours sleep every night, the price of not getting it is huge and not worth it. Somehow though I don’t understand it, it never takes more than minutes and I am asleep, I expect at it’s worst, it might take 20 minutes, but normal nights it is around just 5 possibly 10 minutes, tired or not. Trust me, 10 minutes of fear is long enough for anyone, but it is that fact that I feel fear and still sleep, that totally astounds me. I can honestly lie there convinced that if I go to sleep, I won’t wake again, but that will feel like it was my last thought that night, before sleep sweeps me up and all fear is gone. I remember a couple of years ago writing a post about how I am so sure that I was dying but having a feeling of what will be, will be, then falling into sleep truly not expecting to wake. That feeling is still there, but it has also changed over time, I suppose I have become used to believing it is the end and waking the next day, that I now take that feeling with a pinch of salt. It is no longer a case of just accepting, more a case of expecting to wake, whilst still accepting I might not, then shutting my body down and waiting to see which will happen.

Oddly, it is the afternoons that are often the greatest battle as everything is telling me I need to sleep, but my entire body can work against me. I have found that the longer the time I set the alarm for, the easier I sleep. It is almost as thought if I set it for an hour, then my body goes into this stupid battleground, counting the minutes of sleep lost by not being able to shut down. If one there is one thing that sleeping in the last few years has proved to me, is there is nothing that you can’t in time get used to, or learn a way of handling it. If I were to take a perfectly healthy person, put their upper body in a tight corset that restricts their breathing, then added clamps on different muscles around their body, stuck needles into others and cut the nerve supply totally to the rest, then told them to sleep, they wouldn’t be able to for days and even then it would be broken and difficult. Yet that is how I go to sleep almost every night and then sleep longer than I ever did in my younger life. There is only one conclusion I can take from that, I have become used to what is happening to me, I still don’t like it, but I am used to it. My body has adapted to how it feels and has learned to ignore it for the greater good, without sleep I would be so much worse and my body knows that as well as I do. When I was younger, my way of dealing with everything that happened to me at night was to just give in and get up, surviving on just 4 or 5 hours sleep. As my health got worse and worse and I became too tired to cope with anything, I had to sleep and I stopped getting up. I would just lie there as motionless as possible, pain or not I didn’t allow myself to keep changing position, I persisted until I had clocked up my allotted time in bed. At its worst I got up just as I had gone to bed, at it’s best, I was at least rested physically and that helped me no end. I believe that was the point where my body learned to deal with it all as slowly I did sleep and I slept more and more.

I don’t know if it would work for others and it didn’t happen in just days, it took months, but I know the wonderful benefits of both being more rested and those wonderful hours of escape from all of it has brought. I may still feel tired most of the time, be in as much pain as I ever was, but I also know that all I have to do is reach that point in my routine and sleep will be there. Surely it is worth trying if you’ve never truly tried it before.

Read my blog from 2 years ago today – 4/04/13 – Thinking of nothing >

It used to be another day another dollar, oh how I wish it could be! It’s funny how so many people are out there right at this minute doing jobs that I wouldn’t even have considered before but I would be so happy to be able to do right now. I almost guarantee those self same people are probably wishing they didn’t have to go there or …….

Deja vu

Last night felt as though it was never going to end and when the alarm clock did herald the official start of the day, I just wanted the night time back. The discomfort I had been in since Friday had left me with no option but to step up to the stronger laxatives prescribed by my doctor, I knew before I even headed to bed last night that the night wasn’t going to go well, as it was night two and the results of the second dose is always the same. I had spent the majority of yesterday switching position and searching for the wonderful thing that I knew there wasn’t the slightest chance of, comfort. Getting into bed was bad enough as it means using those muscles in my stomach that were already straining and locking into spasms and were passing on their warped messages to my diaphragm. Go and try it right now and see for yourself just how difficult it is to sit, swing your legs onto the bed and then lying down without using a single muscle from your ribcage down to your hips, add in the pain and the picture isn’t a pretty one. I lay there longing for sleep but having to control my breathing as anything beyond the shallowest breath just wasn’t pleasant and meant sleep wasn’t going to come easily. I have been using relaxation tricks for years, not only do they let you drift into sleep, but they are one of the few things that allows me to cut out the chatter for a while, as the conversation has to be held on the subject of rest and which muscle I want at that second to go to sleep. It doesn’t usually fail, but last night it did, last night there was just too much pain and too many breaths that hurt, for me to be able to control the rest of my body and keep my mind fixed on what I wanted it to do.

Pain in the day time hours is something that anyone can deal with, we take our tablets, we distract ourselves and our days pass, one after another, with their differences but somehow they all feel the same. In the day time, no matter how bad it gets there is always something that takes us on, hour after hour passes and the pain comes and goes with them, we have things to look forward to, points in the day which we mark as the next one to get to. Time to eat, time to do this or that, the time we have company and the time we know we have to get through alone and we keep going, we keep going not because we don’t have a choice, but because we choose too. We have those good days the days where pain isn’t our main issue in life, it will be something silly like a tick that drives us mad, or we are filled simply with the joy of being alive. Daytime is easy for everyone to survive, ill or not, but night time, night time even when we are not in pain, night time without sleep is just wrong and not only wrong, it is painful in its own way as we know what will happen if we don’t sleep. I have got used to the fact that I can no longer roll over or even balance on my side, that going to bed means that I am there flat on my back with nowhere to go until it’s time to get up. But when you can’t find sleep, the one thing you desperately want to do is curl up, but there I am stuck flat on my back with nowhere to go, no position more comfortable, because there is no other position possible, all I can do is lie there like some kind of dead plank. When pain drives you to distraction, the one thing you yearn for is comfort, the chance to ease what is happening to you, but the only options are to stay where you are and hope sleep takes you or get up, where there is no chance of sleep at all, so I lie there motionless and hoping.

Waking at 4am told me that I had been asleep, somewhere along the line sleep did win but even at that point I was finding it hard to believe I honestly had been asleep. It was just the same at 4am as it had been at 9pm, nothing had changed other than the fact I was aware of being awake rather than aware of trying to go to sleep, whatever had happened in between seemed to have vanished as though they were only a second apart. Despite all the well measured drugs, prescribed by those experts who don’t live this way, the pain has won through and I was once again conscious of it and that meant I was awake. I pulled myself upright, my body was screaming that it needed to move, it needed to be anywhere other than flat on my back, so up it was. There isn’t much to do in a house at 4am where the only person you have near you is asleep and you have to move quietly not to wake them. Even this has now become a routine, when pain wakes me, I get up, I take a pill, go to the loo and head into the kitchen where I light a cigarette and sit in the dark, waiting to feel the edges of the pain dulling. I used to get up and leave my sleep mask on the bedside cabinet, waiting for me to return, but these days I take it with me and for good reason. I have walked around this house in the dark for years, never switching on a light as there really is no need, our home like almost every home in the world these days is peppered with LED’s glowing either red, green or blue, waiting for their next command, they alone light my way, but they also pierce their way into my eyes. I don’t know what it was that made me think about it, but the other week I sat in the kitchen with my eye mask on, cutting out the lights and glow of my cigarette, to my surprise I discovered that going back to bed and back to sleep, seemed to happen with so much more ease. I already knew that total darkness, protection from the steady glowing alarm clock and light that sneaks in above the curtains brought a better nights sleep, but I never thought that those tiny specks of light could make such a difference, trust me they do.

Last night I lay there still in pain, booster pill or not, my mind racing over old posts I had written about my fear of finding the doctors when I eventually see them, insisting that I spend some time in hospital with all the issues that would bring. The chatter kept coming and coming, I slept, I know I did, but it wasn’t real sleep and with every pain that my mind felt, more chatter filled in around it. I even looked at the clock several times, I was hoping what remained of the night away, yet at times it was just minutes, others over an hour, but it was still there, night time and pain. I thought that I would find relief in the sound of the alarm, but all I found was more of the same, but this time awake and the pain was getting worse and worse. Adam was just out of the shower when I found myself flying to my feet, once more I was feeling spasms so strong that they brought tears to my eyes and this time I knew there was going to be some relief. No matter how much pain my PRMS puts me through, for some reason this is the only pain that I feel is unjust somehow, how can something as natural as going to the loo, actually be like this, how is it right that I have to lose half of one night and then almost a whole nights sleep every week and three days of discomfort, to achieve what everyone else manages without the slightest thought. Four visits to the loo, each as painful as the last has at last brought me to the point where I knew I have a chance of peace for a few days, before it all has to start again.

Pain in the daytime no matter how bad is somehow easier to deal with, but at night, at night it is a hell that there is no escape from, nowhere to run to and nowhere to go. Night time is the space in our lives where we are supposed to heal, to renew and regenerate, to be ready to deal with what the day holds, but when you don’t get that, when there is no rest, then the daytime becomes something else, they lose their fun, their sparkle and their specialness, they are just more hours of pain. Tonight I will sleep, today is just another few hours to go through so that I can find the sleep that I should have had already. Tomorrow will be a better day.

Read my blog from 2 years ago today – 31/03/13 – Summertime, sleeping time >

Now full of wedding cake life is settling back into normality, the proof? Adam is snoring on the settee! lol I have to say that last night after they left I was so exhaustive, I sat sort of not really with it or with anything else either! being in that sort of limbo land is somewhere everyone knows well as it is the point we go through as we fall asleep, I seem to have learned how to go to that point even when I am sat talking or watching TV……

It’s such a simple thing

I seem to be being hit by waves of tiredness this morning, which after another two nights of disturbed sleep, isn’t really surprising. I had been so hopeful that sleep was going to be something that I was going to get for a while, four nights ago I slept without waking at all and three nights ago well I was up only once, but the pains have all returned full force in my stomach and sleep is once again something I am not allowed to do. I know that at its worst I am awake for just 10 to 15 minutes each time but any spell of being awake, even just long enough to check the time before returning to sleep, seems to just knock me for six the next day. Last night I was up three times and awake once more after that, but when I wake in pain, regardless where it is, I find that I have to get up, just lying there means lying there in pain, getting up usually breaks it and allows me to return to peaceful sleep until the next time. We all need sleep and we all need good sleep, once ill, those needs are multiplied over and over again as your health slowly fails.

It is the side effects of lack of sleep that most people don’t seem to understand, as we have all gone through spells where we aren’t really sleeping and you get over it. Anyone who has had a baby knows exactly what it is like to not get sleep, but you still go to work and carry on as normal, maybe you feel a little down and as though your body is in need of rest, but you just get on with it. That was my opinion as well I had been there and done that, lack of sleep was difficult but not the end of the world, I believed that right up until my health had reached a point where I realised just how important sleep was going to be and has proved to be as time went on. There are so many different things that require that sleep to restore themselves and so many different factors that work along with our sleep that really can change our entire lives. Up until this year, sleep was something that I did with ridiculous ease and without the slightest chance of waking, within seconds of my head touching the pillows, I was asleep and apart from a bomb hitting the house the chance of waking me was tiny. I can map the two thing perfectly, my bowel issues and my lack of sleep go together with total ease, as they have matched each other step by step. I don’t know how I sleep through the spasms and pain the PRMS cause me, I just do, I suppose it is a case that my body has learned to not react at night over the long slow build up that had been the course of my health for the last 30 plus years. December was the last time that I had more than two night sleep in a row without being woken by anything, right to the point that I slept for 12 hours with ease, not even waking to go to the loo or even moving in my bed, waking exactly as I went to sleep. Then all the mess that is documented in the previous posts started and sleep became this monster that I longed for but wasn’t allowed to have. What the exact difference there is between pain in my stomach and pain anywhere else is I don’t know, but there clearly is one as in the last three months every single time I wake it is because of spasms in my stomach. At times, I know without a doubt that it is either just the movement of wind or solids inside of me, stretching and crashing it way around my intestine. Other times it is clearly my diaphragm that has been pushed to its limit from the pressure below, but both are pains still there when I wake and both require me to stand and move around until they release, whichever it is that wakes me, I always know it is just the start of something much bigger.

When you don’t get the sleep you need, nothing seems to go smoothly and everything that you could normally handle, seems like suddenly huge and an issue that is going to take over your life, rather than just another of those hiccups that life likes to throw our way. It rips apart that all so important routine that not only keeps me sane, but is required for every aspect of my health and something I have also written about a lot. Once that routine starts to slip, everything slips, I had my daily online work down to a tee, I could manage to complete everything by 1pm, giving me a couple of hours to myself to do the things I wanted before having to take my afternoon nap. Between my tiredness, the lack of concentration that that causes and the general stop-start effect that it has means that I am once again back to taking all of those two hours, just to complete everything. The longer I am without my full sleep, the more frustrated I am getting by not having the time to rest and just do things for myself, like dying my hair, which now has two inches of horrid grey showing where purple should be. When you are tired like this for what feels like your entire life, life feels like one long chore without the high points that should be there to make up for them. Although the normal pain from my PRMS may not be what is waking me, it is eating away at me when I am awake, every twinge now seems to be felt and no position is comfortable for any more than a few seconds, I can’t escape it any longer as sleep was my escape.

I spoke the other week of being on a spiral with all the problems that my bowels were causing, well this is the next layer of that spiral, this is the layer that pulling my general life quality down as well. Constantly feeling as though I need sleep, is something that makes me just like everyone else, that little bit more short tempered, I don’t like snapping at Adam and although he understands, it doesn’t make it any easier, but I am not just short tempered with him, I am now short-tempered and impatient with myself. So why don’t I just go to bed right now, simple, I have to at least stick as closely as I can to my routine and to get everything done, if I went to bed now, well I would just be building up the problems for tomorrow as I wouldn’t sleep well tonight. Life right now feels far too far over into the lose, lose side and I don’t like it. I am too tired to want to do anything but desperate to get it all done, not wanting to eat, but having to or I know my bowels will stop completely again, I want to sleep but I know it would just make things worse. Right now if the doctor said that he was going to give me a stoma, well I think I would take it, as long as they could reverse it in a week, during which time I would ask them to knock me out and keep the world a million miles away from me so that I can just sleep.

When I was a Mum with tiny children, I could weeks on just a couple of hours sleep a night. When I was a DJ, well I did just the same for the time I was on the Radio and gigging live, the radio station being a two-hour journey from home and my evening venus. Even when I was in my last job, there were many months when I got no more than 4-5 hours sleep, due to the levels of work I was having to do at home, just to keep up. Now I can’t manage with a disturbed 13 hours per day, even when I do get a couple of good nights every few days. Sleep is one of those things that people just don’t realise how important it actually can be, it’s such a simple thing but it is also such an important thing as well.

Read my blog from 2 years ago today – 25/03/13 – The visit >

Everything is in shortened versions today as Teressa and her fiance will be here today so that Adam and I can meet John before the wedding. Adam miss read her Facebook on Saturday and gained the impression that they wouldn’t be driving up until Sunday rather than on the planned Saturday, so after I went to bed he thought he would take all the covers off the settees and wash them. The phone range at around 10:30 yesterday………