The ticking of time

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

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

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

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

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


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

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

It goes on…..

The door bell rang yesterday afternoon, it wasn’t that long after I had spoken to Adam as he wasn’t coming home for lunch yesterday, but he always likes to check I am alright. I knew from the way it was rung that it was the postman, so I stood up and headed out into the hall to let him into the block. We have an old fashioned intercom system that looks like a phone on the wall and as I reached up to lift the receiver, I felt my hand stop about half an inch from its surface and the muscles throughout me tighten. I had to mentally kick myself into actually doing what I was there for, to lift that phone and say hello, yet I hesitated, it was just for a second, not any longer but in that second I knew what was happening and I wasn’t going to let it, Monday had clearly had a bigger impact on me than I thought it had when I was writing yesterday. Then I was still angry, still wanting to make everyone aware that the world still has morons in it who don’t think at all about the effects of their own ignorance when they aim at those who can’t do anything about it at the time, other than be angry. I was angry for a thousand reasons, but most of all that I had been put in that position due to all the things that are wrong in this world from my own health to the fact that there are people willing to be so vicious toward another human being, all that anger changed in that second at the intercom.

I haven’t felt that way for a long time, in fact, the last time was not long after Adam and I had become engaged and moved into what was our first home together, then it was someone I knew that was scaring the hell out of, an ex-boyfriend who had started stalking me. I remember feeling that same moment of fear every time I saw what might be his car on the same road as I was on, or possibly himself when I was out and about. It was the identical moment of hesitation before pushing the bravado button and acting totally normally so if it was him, well hopefully he would see that I wasn’t bothered. I wasn’t expecting it to be the Asda driver back at my front door, but it was that action that had let him into my home, I had let him in here by answering the intercom. Even when I returned to the living room, I was still totally unsettled and it took me a while to get on with things, but I couldn’t help feeling it over and over again. About an hour after that the phone rang and this time it was Asda’s, I went over with them what happened and how I had been left feeling yesterday, I also gave the web link so they could read everything I wrote yesterday, even though it was an abbreviated version of everything that happened, I wanted them to read it as I wanted them to put themselves in my shoes. The manager of the delivery drivers was off yesterday, but the person I spoke to was totally apologetic for his behaviour and will speak to his manager today and they will investigate it further before calling me back.

I didn’t tell Adam when he first came home about what had happened in the hallway, he had already told me that he had plans to do his weights in the kitchen last night and I knew that if I told him, he would want to sit and talk about it and that wasn’t fair, I wasn’t going to let it spoil his day as well. I had spent the rest of the afternoon just feeling that wave every few minutes it just appeared out of the blue, I didn’t even manage to sleep, despite wanting to if just to block it all out. The one thing that brightened my day was all the lovely tweets and comments that I received, it really did help just to know that total strangers were as disgusted by the whole thing as I was. I did tell Adam about the phone call though, he like me are quite happy at the minute to wait and see just what they have to say, although she had said she was going to talk to his manager today, I know that a lot of the drivers only work part time, so they may not be able to talk to him today, but we will see. It was about half an hour before I was due to go to bed when Adam came through to the living room having put all his weights away, as he ate his sandwich which he had brought with him, I told him about the freezing instance, he clicked immediately that it was the fact I had let the guy in by answering the intercom without my having to tell him and just as I expected he wanted to talk it through. I was the one who cut it short, as I didn’t see the value of going over it, it had happened, it was a sign that it had all had a bigger impact on me than either of us thought and it was over. As we were saying good night, he announced that he thought it was a good idea if he was here when the shopping arrived in future, which was a statement I had been waiting for, but as I said to him, this is one driver out of hundreds who have been here, one bad person, doesn’t mean they all will be. As soon as I shut the bedroom door, I was once again in floods of tears, it was the second night in a row that this man has left me crying myself to sleep and the second night in a row where my sleep has been disturbed and not the normal escape that I have daily.

Bravado may have gotten me through the verbal battle of Monday, but bravado only works when there is someone there to see it. It isn’t until we are alone and the anger has gone that we start to really feel the true effects of anything. I never thought that a single person that I didn’t even know could make me feel this way, but I do now. I thought myself stronger than that, I thought that no one who could make me feel that way without laying a finger on me and that is the other horrid thing, those feeling drag out of you memories of the times in the past where you weren’t quite so lucky. That’s why sleep hasn’t been it’s normal joy, between the pain and the memory of faces and places that I thought were once packed away, then forgiven and released, appeared and taunted me again. The two crates in the doorway had given me the freedom to defend myself verbally as just as when I was a DJ, my DJ booth was my kingdom and I could do anything within it in safety, stepping out of it and I was a different person, vulnerable and ready to run, those crates gave me that confidence back and my freedom. If they hadn’t been there, I doubt I would have said half of what I did in my defence and I know without a doubt that the tears would have arrived much much sooner than they did.

This morning, I am numb in every way other than to the pain in my body, I have been living on booster pills since he left and I doubt I will be living without them at any point today. Delaid reactions are often the worst as they appear from nowhere, if the postman hadn’t called yesterday, I doubt I would have felt it until he next did as it was that simple hand action that released it all. At least now I am aware of it and I know that I can answer the intercom without anything horrid to follow, but what I would really like and I think would be a wonderful punishment for him, to be made to sit and read not just this post, but every single post I have written in at least the past month, maybe, just maybe he might learn not only what he has done, but he might also learn that people aren’t always as fit as they appear and that one day in health has nothing to do with the next.

Read my blog from 2 years ago today – 15/04/13 – Steps of grief and renewal >

A new week so here’s hoping that it is also a new start with changes in it’s wings, well as long as they are in the right direction, lol. It was a kind of strange weekend, almost like it wasn’t one if that makes any sense. Adam was here as always, but the entire two days just seemed to pass without any impact on me. I got up, I wrote, I slept, I watched TV, I ended my day in bed, then I did the same again. Life can be like that occasionally…………

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 …….

Hidden blessings

Exhaustion is pulling on me badly today, it has that all too well-known feeling that I am being dragged down into a need to sleep so strong that it’s hard to ignore. Since I wrote the post on fatigue the other day, I realised that I am as guilty as a million other people with chronic illness of just saying “I’m tired” or “I’m exhausted”, when the truth is it’s all fatigue, having said that, when it comes to the word exhaustion, that I don’t use so much, that really is a combination of real tiredness and fatigue combined, so sleep helps just a little. If I am being honest with myself, anyone would have found the last week exhausting, there is nothing more exhausting than intensely felt and worked through emotions. I have been left feeling weakened but oddly good, as so much has been worked through that I know things are going to be better for both Adam and I, it’s just going to take a little time.

Right now though I have just one thing on my mind and that is the constant pain and discomfort I have spread over the entire area from my waist to just under my breasts. Between my diaphragm, intercostal muscle spasms and my guts just not shutting up for anything, I right now would just like someone to remove that entire slice out of my body. There doesn’t seem to be any comfort anywhere, even lying down brings no relief, in fact, it normally makes it worse. I don’t understand what happens when I shift from vertical to horizontal, but something major changes as the feeling of tightness and pressure just keeps rising and rising, until sleep takes over. I honestly don’t think that if it wasn’t for whatever damage has happened to my sleep centre, that I would ever sleep. No one can sleep through such sensations and pain, especially as the tighter it all gets, the louder and faster my heart seems to get also. I know this is going to sound odd, but it is a total fact. As I go to sleep, I always land up breathing through my mouth and as I relax further and further I start to be aware of hearing my breath, almost as though I am breathing heavily onto the duvet. I now know it’s not, I know because recently when I have had this intense tightness and pressure, I am actually hearing my pulse in my breath. Every breath out, has tiny breaks in sound that totally match my pulse, but nothing on the inwards breath other than silence. When I first heard it, it made sleep really difficult, as soon as it started I would rouse enough to stop it. Gradually, I have managed to firstly get used to it, but also to not blame on, as I did, my right lung, but the pulse in my neck, somehow it is changing the sound my throat is adds to my breath. It has only been like that for a couple of weeks, not the noisy sleep breathing, Adam has been telling me about that for years, just the new addition of the pulse, which only happens when my mid region is locked in these tight pressure cycles. Clearly I am relaxed enough in both body and mind to go to sleep, that is how used to the whole pain/pressure thing I am, yet I can’t relax my way out of either, there is nothing I can do about them, so I sleep and escape it all for a while.

It sounds so wrong to be able to sleep when I have my body screaming at me there is something wrong here, but if I didn’t, I would never sleep, there is always something it is complaining about. I am sure that years ago that it played its part in the fact I would only sleep between 4 and 6 hours, the longer you are ill and the longer you live with something, you slowly do relax about the whole thing. There is no point getting stressed about hearing you pulse or the pain in any part of your body, I have learned that I survive them all, well I am still here, so I must. I quite honestly don’t think I have been stressed about myself even slightly in the past 7 years. Of course, I was stressed when I was made redundant but that was stress about our future, not my health. I have been able to separate out my health from everything else that might be happening for a long time and it is actually quite an easy thing to do. I suspect it is because of the length of time it took for me to be diagnosed as I had actually begun to believe the doctors who kept brushing me off as it ” all being in my head”, I kind of started to treat it that way myself. It didn’t matter how physical the symptoms, I pocketed them in a space that meant I could carry on living, it wasn’t until I was diagnosed that I let them out, only to find that it really didn’t matter any longer. In a strange way I had learned by myself that whether others believed me or not, I could live with all of it and had to, as no one was going to pay me for staying at home ill all the time. I simply learned to get on with life regardless of how I felt. Even when it got so bad that I knew I had to try just one more time to get an answer, I didn’t let them win, nor did I let them win until I couldn’t manage any longer and I wasn’t fooling anyone, not even myself and home was the only place for me. What it taught me thought was how to deal with the worst things that always turn up when you least need them, like while you are trying to sleep, I can still pocket them, separate from the need to sleep and in a way that lets me sleep.

It is something that I wish I could teach to others, I can’t imagine trying to cope with all this without my escape of sleep. I may not like sleeping 12 to 13 hours a day, or the fact that I feel now as though that is no longer enough, but I can’t imagine what it would be like if all I was getting were those same 4 to 6 hours I used to, when my health wasn’t nearly so bad. In many ways, I think that those doctors who won’t prescribe strong pain control or sleeping tablets to those who are never going to be well again are practising cruelty, yes I still count my blessings.


Please read my blog from 2 years ago today – 25/01/13 – No pain can be worse than pain

I woke this morning with something missing, my left foot. It was totally dead to everything, which as you can imagine caused just a few problems with getting out of my bed, it hadn’t just ‘gone to sleep’ as in lacking circulation, it was totally missing as if someone had actually cut them off. This is far from the first time, but the scary thing always is will it return……

It’s just sleep

It is the third morning in a row that I have come through here and asked Adam to put the fire on, the outside world is freezing and as always so is the house. Well to be fair on the heating system, it’s not, just not as warm as I would like. There are some advantages of living on the second floor of a Victorian terraced flat, the surrounding flats do help to keep us that bit warmer but, without real insulation that every new house has these days, we all also loose a lot of what we try to put in. Like so many things in life, you take your pick of what you love most and like most people in this world, I want the lot! It is odd how we fall in love with the places we live, regardless of all the major reasons I could give or could be given for living somewhere else, it would more than break my heart to leave here, no matter how perfect the place I would be going to and it would have to be beyond perfect.

I didn’t just wake to find the house cold this morning, I woke to the alarm clock, nothing had disturbed my night, I have been up for some reason or another every night for the past 5 nights, but something wasn’t quite right, I could hear the alarm clearly. At some point during the night, for reasons that only my sleeping self knows, I had taken out my right earplug, I could hear clearly because it was missing and I still haven’t found it. This is the first time I have woken without an earplug, I have woken a couple of times to find I had removed my sleep mask, once I had even managed to put it on top of the draw unit beside my bed, but I can only guess that last night my ear was itchy and I couldn’t get to it due to the plug, the things I manage to do whilst asleep seems to be growing all the time. Honestly there was a time when I went to bed at midnight every night and got up at 4:30 am for work and did nothing but sleep like everyone else, on my side to start with and somewhere else the rest of the time, changing over and over. I was also the sort of person that if I tried to lie in at the weekends or when on holiday, I would have a banging headache to deal with, sleep was something I did because my body demanded it, but equally it also demanded I didn’t sleep too much. There is an odd drawback to not moving off your back at all and that is I often wake to find that the entire back section of my body from the top of my head to my heels, is tingling and painfully numb. It is so intense that I have to move and the second I do, it is gone, which leaves me with the huge question, how come I didn’t move when I was asleep and simply fix it? There is something really odd about my 10 and half hours sleep that I have nightly, I am totally cut off, way beyond what I would call normal when it comes to my lifetime experience of sleep. I must have wondered a million times just how long I might sleep if I didn’t have my alarm set, but I am so scared of messing up my routine that without I would make my health worse and worse, that I just can’t test it, but I still wonder. Everything tells me that I am more than dead to the world, at least in the first half, I can be disturbed by noise or light after the first 8, hence the recent addition of my mask and earplugs, but even then I still don’t move at all from the spot I was in when I went to sleep and that isn’t normal. Nor is my total ability to go to bed at any point in time and be asleep in minutes, whether I felt tired before I lay down or not and I now never wake with a headache. It is only in the last couple of months that I have been disturbed in my sleep, having to go the loo, or being woken by the people upstairs going to work, so the normal pattern in MS of fatigue caused by sleep disturbance, doesn’t actually match up with me. Right from the point when my MS turned into PRMS, sleep became something I just couldn’t get enough of and it has just got worse and worse as time has passed. When I started writing my blog, I was having two hours less sleep every day than I have now and if I am honest, well I know I could now easily sleep even more, the problem really comes when I try to work out when.

Although I do sleep during the day with ease, I know without a doubt that I am not getting the same deep sleep that I do at night. I still don’t move, but I also quite often sleep for an hour and get up without the alarm sounding, not always but about 20% of the time. Sleeping at night for all of us has much more of a renewal quality, not that I ever wake feeling renewed or refreshed, more just capable of another day. Sleeping during the day, is more a way of extending my time in the evening with Adam, without it I know that I would be in bed earlier than I am and as we only see each other for a couple of hours each night as it is, well I don’t want to start having to go to bed a 8 pm. So why don’t I just reset my alarm to go off at 8:30 instead of 7:30, there is a list of reasons why not. Firstly there is the fact that Adam is up during the week at 7:30 so that he can go to work, it is a few minutes that we have together and a time that lets me know that my husband who isn’t good at getting up to alarms, is actually awake and at work. The second one is actually the harder one, other than when I was a DJ and working into the small hours, I have always been up no later than 7:30. It is the time that days start, the world starts to move and I feel inside that I have to be doing something, I have to be here at my PC working if you like.

The longer I am ill, the more I realize that so many things aren’t what they appear on the surface, there are so many deeper reasons, meanings and feelings behind so much of what we do and sleep is another of them. Our bodies and minds may demand sleep, but ultimately it is our conscious selves that decides just how much we are going to allow it to have and when. Losing control of that conscious decision means losing control of so much more than just sleep. My whole daily routine is built around that start time and as I am still trying to hold onto “normality”, letting go of that start feels completely wrong. Letting go of the “normality” point would be like letting go of life and admitting that I am no longer part of the “normal” world, I would be giving into my PRMS totally and admitting that “it” now has final control.


Please read my blog from 2 years ago today – 17/01/13 – Aged by the invisible

My day started just in the way I expected with a snipe from Adam, as I said he read yesterday’s post once I had gone to bed and wasn’t happy I hadn’t told him at the time, I asked him what he would have done and he shut up after one word, “well…”