Keep me vertical

Posted on June 7, 2015 by livinginalimitedword

I woke this morning just after 6am and totally frozen, it didn’t take me long to find out why. I was lying as always on my back but without any covers over me, one foot on the floor and my eye mask missing. It was a position that had me confused at first, then the fact that I had woken a 4:30 am needing to go the loo, slowly formed in my head. I remembered getting ready to get out of bed, even taking the covers off me but then nothing. I have known for a while now that I had the ability to fall asleep in seconds and that tiredness was really pulling on me badly, but to have done so whilst in the middle of getting up, well that one is my own personal best. For the last few weeks now I have been pushing through each day with the feeling of wanting to go to sleep and with that almost overpowering feeling that if I were just to lie down, I would be gone in seconds. It has been worse this week for some reason and even now my head has that heavy feeling and my mind somewhat distant and fuzzed, not drugged, just not quite there. The other day I wrote about how if I even sit totally still, my body starts to shut down, disappearing into a pre-sleep state. I just didn’t realise that it was actually that real and not just a feeling or sensation. When I did go back to bed this morning after already having over 9 hrs sleep, I was once again gone in seconds. Just a few months ago, I wouldn’t have even bothered going back to bed knowing that the alarm would be sounding in around an hour, I would have just stayed up and started my day.

I don’t know where my ability to go to sleep with such ease came from, even years ago I always seemed to fall asleep with more ease than those around me. Nothing like recently, but generally quicker than anyone I have ever shared a bedroom with. I guess that along with my habit of getting up whenever I first wake, even if that was 3am, is partly what is behind my lack of ability to remember dreams has come from. Most dreams are remembered in that half-world, the times when you aren’t fully asleep and before reality becomes just a memory. It is that lack of time spent in dreamland that I think was behind my total dislike and disturbance I felt from the vivid dreams that were being caused by my taking my booster pills with freedom, rather than absolute need. Last night was a perfect example, I remember nothing other than tucking the covers around myself when I got into bed, getting comfy and my waking points. If science is right, I must dream otherwise I would be not just a little nuts but totally insane. Either way, I am glad that sleep is something that I have mastered as it is truly my greatest escape. I guess though it is also wrapped up in my fear of pain, as although it doesn’t happen a lot, I do already often wake in pain during the night. I know sleep is vital to my ability to function, the idea that I could loose hours of sleep, which I know makes my pain worse, is behind much of that fear I spoke about yesterday.

Of all the things that I know my body needs, sleep was never one of them until the last five or so years. Up until then it was something I had to do a few hours of, a very few hours of and was more an annoyance than a joy. I know that my health has changed my relationship with so many things other than just people, but sleep has to be the biggest one. I now crave it more than I do food, even my favourite ones have slipped into a bracket of nice but not essential. I even think if I was given the option of a cigarette or one good hours sleep, I would choose the sleep and that is a huge thing for me to say. All that said, I am now finding myself at a point that feels alien, as I can feel that need closing in on me and wanting to take even more out of those basic 24 hours. I was content to let it past the 12-hour point as I still felt that I had enough hours in my day to still call it a day. But the idea of letting it now take even more is just wrong. I am fighting to hold onto those precious minutes and I am at the moment honestly talking about minutes. Each evening we sit and we watch TV together, at 9pm I say good night and head into sleep again. Recently, I have found myself getting up before the program is finished, you know at that point when you know the story is over for that show, about five minutes before the credits. I am rushing off to get ready to bed, in the hope that 9pm will find me actually asleep. Minutes shouldn’t make a difference, but they are suddenly vital, those minutes might be just enough for me to not give into going to bed at 8:30 or earlier, or possibly getting up later. I am trimming minutes here and there, trying to find spare ones that I can shift around to give me more real-time.

On a good day, I have 11 hours, on a bad maybe 10 sometimes less, any less than that isn’t a day, it a happening between sleep patterns. But then you have to throw onto those scales that even though I may not be in bed, how far from sleep is my body at any time when given the space, it starts to shut down and sleep whilst I’m still physically up. It’s a quandary that I keep pushing aside, something that I keep telling myself is off in the distance and will sort itself out without my worrying about it. But that’s just it, it seems to be sorting itself out and I don’t like it. Who on this planet falls asleep while getting up to go to the loo? I thought that rest and relaxation would make a difference, spending more time doing silly things like playing PC games or surfing the web. So I tested it, I cut back on this and that and made space to relax, the result, still here feeling tired and feeling that sleep is one horizontal position away. I don’t want to give up my day, to cut into it any further, I don’t want to be beaten by something so simple as sleep.

Read my blog from 2 years ago today – 7/06/13 – Trying to find relief

The temperature didn’t give in at all yesterday, despite trying many different ways of staying cool I found little relief from it. I did find one thing that has made a huge difference to cutting the sweat from pouring of me and I feel totally stupid for not thinking of it before. As you know I have a great deal of pain from just sitting, well the cushion I have which gives…..

Time to think again

Posted on June 3, 2015 by livinginalimitedword

I was just sitting here eating my breakfast before I started on my blog and sort of found myself watching the TV. Well, it’s there and on, what else can you do while you eat if you don’t want your breakfast inside your keyboard. As I watched I decided to start channel flicking, looking for something to have in the background while I was writing, I hate silence. Oddly I find it makes writing harder, I think it’s because the silence when I’m not hitting the keys is deadening and make each second of thought harder. It was one of those odd things that I wasn’t really conscious of make a choice to stop channel hopping, but there I was watching some program about UFO’s. I realised that yet again I was watching and laughing at myself for the fact I was watching. I do believe life is out there somewhere, maybe or maybe not buzzing our planet, but out there somewhere. Yet I was watching, once again listening to the accounts of people who clearly believe what they saw and I’m not saying they didn’t, see it, but it started me wondering. Why is it that people get TV programs made about their experiences with things that many don’t believe in at all, yet no one ever seems to want to listen to or believe someone who is ill, but can’t get a diagnosis. clearly my mind was split between what I was watching and the fact I was about to start writing, but I guess it’s just another example of how warped this planet really is. Thirty years ago, well I can forgive them for that, medical science has come a long way, so to have it still happening, isn’t really acceptable. It is one of the constant things that I hear on Twitter over and over again, people having to fight to get a diagnosis while they continue to suffer without any help what so ever.

In some ways, it doesn’t really get that much better once you do have a diagnosis. Yes, you have what in many ways is the most important thing, a name to explain what is happening and that is a hugely important thing. That alone is a life changing thing, something that in many ways doctors won’t understand until it happens to them. Once you have that name, if you are very lucky, they can then cure it. If they can’t do that well for some there will be a course of medication that will ease you symptoms and make life bearable. Then you have the ones like me, no cure, no medication to make life normal, just firefighting and pain relief. PRMS doesn’t respond to any of the MS treatments, we are the uncurable and the un-help able. All they can really do is observe and throw steroids at us in mountain high heaps when things go wildly wrong. Until the last few years, that for me was fine, I could cope with reasonable ease what was happening and as long as my pain meds were working well enough, well life was good. As things have been getting worse and worse at a clearly accelerated manner has forced me to start thinking about my future. I guess I haven’t really put that much thought into to it as well like everyone else I don’t really want to know what is ahead of me. I have realised though that I can’t be an ostrich forever, I have to face what lies ahead and I have to start making decisions about how I want my treatment to go. I know I have written before about setting up a DNR or as it is called in Scotland a DNACPR, (Do Not Attempt Cardiopulmonary Resuscitation), but that is for the very end of life, there is a huge gap between now and then.

To date, I have been very clear that I prefer to have a clear mind than to be totally pain-free if they can’t be achieved together. I have to say here that I have been extremely pleased to find that Morphine didn’t have the effects that I was expecting. Recently I know that when I use the booster pills like sweeties then I get vivid dreams, out of personal preference, I have chosen to take more pain and not be totally confused when I wake up. The increased pain that I have been living with has side effects of it’s own, it drains my energy faster than anything else I know. The worse the pain, the more sleep I am needing and that’s cutting into my life. If the pain is really bad, that also cuts into my sleep and the whole thing is taking my routine and tearing it into shreds. My PRMS clearly now has total control over my bowels, it can’t be fixed any more than anything else can be, it’s about managing them and we are working on that. So far with little success, other than I have to say the past three days I haven’t had as much of those terrible intense pains that make me want to cry. I can’t work out why, as I still haven’t been to the loo since I took the laxative eight days ago. I can see now quite clearly that my future isn’t going to work out the way I thought it might. I can see that being bedbound is going to start in phases, not out of the lack of ability to not get up, but because I will be exhausted all the time.

In a funny way, I can feel my body shutting down. Not in a way that I feel I am dying, so don’t worry about that one Adam. What I mean is it is all slowing down, everything is drawing me slowly into doing less and less as in the number of hours of activity. I feel the need to move less if that makes sense. I managed the baking yesterday, but when I was finished, well I felt good mentally, but physically, I had this dead feeling. As though my limbs weren’t there, they had given all they had got. Something I know I mentioned a while ago is happening more and more as well. When I am lying in bed, I lose the location of my limbs, I can’t tell for sure if my legs are crossed or not, or if my hands are flat on the bed or up on their edges. I don’t know where they are, as I can’t feel them. As I said when I wrote about it, it had started to happen when I was up and about, now it’s happening all the time. Right now if I stop typing, my arms will immediately start to vanish and if I stay still they will like when in bed vanish totally. All those nerve signals that fly back and forward, don’t flow at all unless in use. Shut my eyes and my whole body starts shutting down, as though I am going to sleep, not dying. I am drawn more and more to lying in bed for comfort as that dead feeling belongs there, not here at my PC. If I go to bed, well I sleep with no difference than if I had lain down exhausted, my body happily shuts down.

I know I will just have to wait and see, but I am now saying without my arm twisted up behind my back by my illness, that I am willing to take more pain control if needed. I have had enough of fighting against the pain as it achieves nothing any longer. I was scared it would shut my body down and all I would want to do is sleep, that is happening anyway, so why fight it any longer. Fighting to not take the drugs has run its course, my PRMS has taken away the reason to fight it. My routine that has kept things level for a long time is no longer working the way it once did. I need to look at it all again and I need to start thinking in more detail about what the future really will be and how I am going to handle it. The last time I did all this was 8 years ago when I became housebound. Yes, it had a major overhaul when I was made redundant 3 years later, but the core has remained the same. It has been tweaked over and over, cut back and trimmed, but my health has taken now taken over.

Read my blog from 2 years ago today – 3/06/13 – The nurture of illness

I seem to be running increasingly behind time today, it’s 10:30 and this is me just starting to write. I have no idea where this morning has gone, I haven’t done anything different or had any reason to take longer than normal, but here I am dragging myself into my main task of the day. That sounds really bad as though this is a tough task I don’t want to do, nothing could be further from the truth. I am guessing that I am already…..

The good in negative

Posted on May 31, 2015 by livinginalimitedword

I have to laugh to myself when I was setting up the final piece to my daily blog, the link to my post from two years ago. Yes, I do do that first, it might seem odd, but if I don’t I normally forget to do it at all and then have to go back at whatever point I notice it and fix it, if I notice it at all. The paragraph I read was about the problems I had with a new keyboard I have purchased, the very keyboard I am using right now and I am about to replace, but for a totally different reason. In just two years, I have managed to wear the paint of several keys, which if the words are flowing easily isn’t a problem as I touch type, but if I stop because I have to fix something or I am having a bad day, I need my keyboard to be perfect. It is bad enough to be sat here staring at my keyboard in total disbelief as I have lost a letter and can’t remember where it is when the letter is clearly there to see. But when you find yourself searching and searching to only suddenly realise it has to be on of the blank ones, but which one, is more than annoying. I even admit to the odd word that I wouldn’t type hitting the air. There is nothing worse than sitting looking at something that you know has to be there and being for no reason other than your mad brain, being totally unable to see it. Actually there is, I have this total fear that one day I am going to sit down here and find that I can no longer touch type at all. I totally love this invisible connection between my mind and fingertips, to loose it would be total hell. If I can’t see what is in front of me, what chance would I have in ever managing to type a single sentence far less an entire post? I know there are people out there who have written entire novels with just two fingers, but it would be the frustration levels that would get to me. That and the pain of losing another instinctive ability, I have lost enough of them.

Silently, typing is a skill that I now put higher than many others, it is one of those things that I hold onto for my future. I have this fear of not being able to get anything out of my brain as spoken words. I have enough problems now when I am just talking to those who know me and can fill in the blanks. The idea of being stuck unable to stutter my way past all those blanks and never finishing another sentence myself is one of my personal hells. Being able to touch type might one day be my only communication and as I already know people complete my spoken words if I can’t type quickly, well they would finish my written words too. I never thought about not being able to talk until that time I land up unable to coordinate my swallowing, breathing and talking, it shocked me how quickly I just couldn’t communicate what I wanted or needed. But more than that it started me thinking about all the things that nerves are required for and how easily we can find ourselves cut off from everything. All it takes is a flare and bang, you’re stuck in a totally different body, one that doesn’t do what it did the day before. I don’t know which is harder, having a dramatic flare that suddenly destroys you, or a long slow progression. Both have their issues and both have their good points as well, if something that is totally negative can be good.

In some ways I think a flare are my preferred option, it gives you a few days notice that something is wrong then bang it hit’s its peak. Like when I lost my left arm, I had a clear weakness in it for a couple of days, then I woke up to find it was dead and useless. It may have taken months for it to come back to the level it’s at today, still weak but working. A flare gives you a fighting chance, it may steal things in seconds, but it also lets you have part of them back, never the full function but part at least. Progression does what it says on the tin, it hits and it keeps hitting, again and again, slowly destroying whatever it’s focused on. It is by far the cruelest of the two as you know what it’s doing and that there is no way of stopping it, but because it’s so slow you keep reaching out in the hope that someone somewhere can stop it, make it change direction or beat it at its game. Every day of my progression of what ver is happening to me with my bowels and diaphragm are documented here. Every week there has been changes and every month it has grown worse. I dread what the next three years has waiting for me, what the progression will produce next and how or what it will go after next.

The total failure of the peppermint oil, one of the things that the consultant had high hopes for has kind of knocked some of the hope that he managed to instill in me. Despite taking the psyllium every day, nothing has happened yet without any other intervention, but I do still have some hope for that one. The pain has remained totally unchanged, if anything, I would say it is slightly worse as the speed it hits after my waking in the morning has clearly increased. I can’t even make it to standing up now, without the tightening beginning. Progress is still happening and still in totally the wrong direction. I know that none of the things that he spoke of is fast acting and I am only in week two of trying this stuff, but so far it is a total and dramatic fail.

Yesterday, I made it through to just midday when I had no other choice but to crawl my way to bed. I felt so sick and so dizzy and unable to do anything, that I had no option. I set my alarm for two hours, not expecting to sleep that long, but as a just in case, I’m glad I did. Adam was out last night so I took the opportunity to go to my bed early, not long after 8pm and sleep held onto me right through until this morning. It’s just gone 10am, I’m tired and in pain, progression or this trial, I can’t be sure, but what I do know is it’s taking it out of me in almost every way I can think of.

Read my blog from 2 years ago today – 31/05/13 – Differences change

I am having fun this morning with a new keyboard, I had to buy one as the space bar was either sticking or not working at all. As you can imagine there is no worse key to have such a problem with, it was totally my own fault that I had killed the old one, it was a victim of my health. Living in the same place day in day out, including eating my meals sat……

A personal sanctury

Posted on May 28, 2015 by livinginalimitedword

I have woke up in pain this morning, a pain so bad that I hardly knew how to walk when I first stood up, yet I slept all night. I really don’t understand pain, you would think that by now I would be an expert yet it still surprises and confuses me. Once again, the pain is all around my mid region, but worst over my kidneys and yet again going for a pee when I woke was almost a waste of time. I am sure that just like as has happened in the past, sometime in the next hour I will go again and pee for Scotland. I don’t get it at all, but when you are being sliced in two by razor wire, getting anything is pretty hard. I am just hoping that when I take my meds in the fifteen minutes that they will bring with them an improvement. If there is one thing I wish I understood, it has to be how on earth did I sleep through this pain for however many hours it took to get this bad? I have had lesser pains that have found me up and sitting in the kitchen praying for improvement so that I could find sleep again, yet something that I would put in the hell brackets, I sleep through? I may not understand it, but I am so glad that I do. Sometimes I do find myself asking questions that I don’t want anyone to investigate in any way, as I know that what I am questioning is a complete blessing. Unless, of course, they can tell me how to sleep through the lesser pains as well.

Adam had taken today off work as he has rather a backlog of things that he needs to complete for his college course and just like the rest of his life, he has left it all to the last minute. Actually, I’m not being fair on him saying that as he has improved a huge amount over this year. Those few weeks that we had at the start of this year when we talked over a million things and sorted out many events of the past that hadn’t been dealt with, have really made a huge difference to him in more ways than one. I find myself even now doing what I know is the wrong thing, not telling him at the time what is happening to me. It hard though to admit that you’re not dealing totally with your own silly body. I find little point in worrying him, rather than letting him read it after the event when he knows and can see that I am still alive and still working my way through life. Like right now, what would be the point in telling him that the pain is so bad that I just want to disappear back into my bed. He would say “go then”, and then spend the next hour worrying that something major has gone wrong. I guess we balance each other really, I worry about little and he worries about everything.

I don’t know why or how my body has developed this ability to shut out severe pain by sleeping, but it knows it too. Whenever my pain levels are elevated, my instant reaction is to want to go to bed. That message screams its way through my head almost as loudly as the pain does. It is one of the reasons that fear becoming bedbound, as either I will just sleep forever or worse still, will the magic of bed, lose its power, leaving me in pain that I can’t escape. It’s odd how we all put such high values on what after all is just another piece of furniture. From childhood on, our beds are our safe place our sanctuary and once there we are protected from all evil, even the monsters underneath them. As my health slowly goes, our bed has become somewhere to escape to, which is probably part of the reason that I refuse to have a TV in the bedroom. Bed is the totally wrong place to have anything that will distract you from the reason of being there. Which is yet another reason that I hate the idea of being bedbound. There is no way that I will be able to stand not being able to have the TV, if I am stuck there with nowhere else to go, yet the idea of that box crossing the threshold of my sanctuary, still seems so wrong, even in that context.

There is one odd thing that I have noticed recently, on the morning that I wake in pain like this but haven’t been up during the night, I always seem to wake with a headache and my limbs a stiff. I really do get the impression that they are nights when I honestly don’t move an inch, not even my legs which according to Adam have always been active. Sleeping on my back doesn’t seem to have changed that, in fact, it is worse as my legs now manage to totally escape the bed so that my feet are on the floor. Restless leg syndrome is well known and can happen to anyone, even without any of the conditions that I have. Those of us with MS are more likely to have than others and, of course, that means my body just had to join in. Their night time wondering is bad enough, but they do seem to have the ability to move by themselves while awake as well and the weird sensations are something else. Years ago I thought it was part of my PRMS and it might still be, but when I read up about it, I couldn’t believe that for once what I read actually matched. Odd sensations like my skin is actually crawling, or that there is liquid, i.e. blood running down the outside of them, were universal. To be fair though, this is a condition that I have, but Adam suffers the worst from, his sleep is often disturbed by it while I sleep soundly. My torso and head may not be moving at all but my legs and arms are all over the place and yes it does affect your arms as well.

Sleep for me isn’t always a peaceful process, but activities or not, it is an escape. Last night I believe it was a deeper escape as there was little evidence that I was on the move, even the duvet that I tuck around my feet when I go to sleep was still tucked tightly. Yet here I am three hours after waking and still in the pain, although, at a lower level at last, that was there when I woke. My headache has gone, either because I am now distracted or whatever caused it is fixed, as is the pain I had in my neck and left shoulder. It appears that not a single second of my life isn’t changed in some way by this illness that I live with. Awake or asleep, it is always making it mark and makes sure I am aware of it eventually, if not at the time.

Read my blog from 2 years ago today – 28/05/13 – Doctors and possibilities

The phone call has been made, so there is no going back now, I am expecting the Doctor here sometime after 1:30pm, unless of course he phones me instead. I still would rather see him as the problems are growing and there has been for me no resolution to the all the tests that found nothing. There may have been nothing inside my gut, but something still…..

Changing sleep

Posted on April 4, 2015 by livinginalimitedword

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 > http://bit.ly/YUFKQo

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 …….