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….

And now the good news

I did it, I slept until 8:30 this morning! Well almost, I did wake ten minutes before the alarm sounded but that hardly counts. I have to admit that I did wake as well feeling better than I normally do, but I’m not taking that as having any great meaning as I was just amazed that I had managed to go against my routine of so many years. I know it is going to take me a while to know if this new life is going to make any difference, but I found yesterday really hard. I found myself constantly looking at the clock and constantly telling myself off. Firstly for looking yet again and secondly, because I was telling myself off for being behind schedule every time I looked. Habits have to be the hardest thing to break, especially when they are deep set in not just your mind but your heart and soul, my parents really do have a lot to answer for.

I did wake once during the night, there was a pain in my left side again and I simply had to move. When you can’t roll over any longer, there is no other way of dealing with pain or discomfort. I can’t really change position, at most I can achieve a slight twist on lying on my back by raising my knees to on side, slightly twisting my torso. The rest of me, from my head to my waist remains firmly flat on the mattress. Getting up means that I can spend a few minutes putting pressure over the pain that often helps to break it. I have found when it is in my side that during the night going into the kitchen and putting my arm along the edge of the kitchen worktop, I can then lean into to. If that doesn’t work, well sitting on the perching stool and pushing into it just with my hand often does the trick. That though is something that is slowly getting less and less effective as the strength in my arms slowly disappears. Luckily last night all it took was the act of getting up and walking to the loo for it to ease and finally let go. I really find these spasms in my torso hard to handle. I thought that just like the ones I have had for many years in my limbs, that I would find a way of dealing with them with ease, but it just hasn’t happened. What are you supposed to do when the pain is hiding within your ribcage? Having a bony shell protecting it, really makes it difficult and I don’t think is going to get any easier as time goes on. I have found myself being much more gentle with them in the last couple of weeks. Having that letter from the hospital insisting that I needed calcium tablets as I am deficient, sort of worried me. I already know that I have osteoarthritis, now being told my calcium levels are low, has stopped me from beating myself up, just in case I break something.

The more immobile I get, the more I do worry about how I will deal with pain in the future. Nearly all the techniques I have discovered over the years, all require some degree of movement and strength. I am sure that half the time when I wake up with pain, it has actually been caused by the fact I have been flat on my back for the past x number of hours. I do and can still sleep right through the 11 hours at night without waking, but those nights seem to be getting rarer. This year has taken my health and turned it on its head. Until January, I slept through every night, getting up was a real rarity. Now between the pain in my stomach and my lungs, I am up probably two out of every four nights. I am convinced though that if I could roll over like everyone else in this world, that I wouldn’t wake, I’d just change position. Pain in the night has always been an odd one. I now know for a fact that I have the same pain levels at night as I do during the day. There is something about my body shutting down, that means I don’t normally feel it. When I do, it’s because it has peaked and not even a coma could stop me from feeling it. Right now I can still deal with it, I just get up. But what happens when you can no longer just get out of bed and take a little wonder? When you don’t have the strength left in my legs and arms to apply pressure in whatever way you can now, what do you do then?

It isn’t just the pain at night that worries me. I am sure that the fact that I can’t and don’t move while I am asleep, a total of up to 14 hrs per day, can’t be doing my lungs any good at all. It is one of the things that I will be talking to my consultant about when the appointment comes through. I have been waiting a month so far, so I could have another 3 to wait, but there are now quite a few things that I need to ask. I know there is nothing they can do about my not being able to roll, but when something like that is playing on your mind, you simply have to know the answer. I am a little odd like that, even though there is nothing they can do to help, I would still rather know if it is a danger or not than having it play around in my head. I like to know the truth, both good and bad. I honestly believe that knowing the total truth, helps you move forwards in life. The old-fashioned theory of “What you don’t know can’t hurt you”, is madness and a lie in itself. If you don’t know you have cancer, it will still kill you. I personally believe that if you know exactly what is happening to you, you mentally handle the whole situation much better. To me, that is half the battle, as once you have got your head around it, you find the strength you need to make life bearable, if still unchangeable.

The pain in my side may have woken me last night, but today for some reason the whole left-hand side of my body is driving me nuts. It seems to be going for it big style. I honestly have pain in almost every inch of it, from my toes to right up to just behind my ear, where there is a lightning nerve pain sparking up and across the top of my head every now and then. Even the entirety of my left arm is in a state of fatigue ache, heavy and not really wanting to do anything. One day, someone will be able to say why half of my body is a permanent mess while the other half just echos it when it wants to. The good news is that my right side, clearly doesn’t want to join in. There is always something good to hold onto.

Read my blog from 2 years ago today – 11/07/13 – A case of timing

I have already opened all the windows in the hope that getting the place cool before the cloud burns back that I will be able to have a reasonably cool house for the rest of the day. I had my normal nap yesterday but found myself once again lying down searching not just from some relief of fatigue, but also from the heat. I am guessing that the reason this year has……

Keep me vertical

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…..

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…”