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 …….

Communication isn’t enough

Some days you really feel as though you can’t do anything right and nothing is going to go your way, yesterday was really one of those days. It started out exactly as the last few have woken a bit early and 3 visits to the loo within about an hour or so of each other, none easy but a million time easier than it has been recently. Lunchtime arrived and as I stood up I had this feeling of something escaping and it wasn’t wind. I did make it there but from that point onwards, well let’s just say standing up was an issue. The last time this happened was a couple of years ago and it went on for weeks, luckily this time it was just all afternoon, but I must have gone to the loo at least 10 times and every single one of them productive, then suddenly it stopped, but the whole thing was my fault. On Saturday night when I had taken my meds, I had sat for a while unsure how much to take of the new medicine that the doctor had given me and unusually, there was no sticker on the bottle to remind me, just the tiny writing from it’s makers, I trusted my stupid memory and took 20mls and thought no more of it until the constant flow began. I did a quick check online to find that the most I should have taken was 10mls not 20, no wonder it was ripping its way through me or that I had woken early with stomach pains again. It was my own fault and I had done exactly what the doctor was trying to avoid, using high doses of strong laxatives to force everything through me so fast that the result was just what happened yesterday, rather than finding the correct dosage to keep my bowels moving correctly. Last night I took no laxatives or softeners at all, my guts were and are even this morning still screaming their pain at me for what I had put them through and I didn’t want to aggravate them further.

All this constant problems with my bowels are really taking its toll on me, I have been feeling it for weeks now, this constant fatigue that eats away at me, is wearing me down. I know that my doctor is doing what he thinks is right, trying to manage the whole situation, but because he doesn’t deal with many MS patients, well to be truthful, I know when I was diagnosed that I was the first person ever on his books, I don’t know if he others or not, but I suspect he does as there is an MS nurse who works through his surgery, but he really doesn’t seem to understand the knock-on effect of one thing on another. All the progressive forms of MS have one huge thing in common, not just the fatigue but the way that every little thing that happens in our lives affects our health, fatigue is a warning sign, but the real price we pay for anything out of routine and our normality, is a worsening of our condition. It can show itself in as many different ways as there are symptoms, you can even find yourself caught in a mad spiral, where the worsening of one thing activates another and that other, activates the original. Finding our balancing point is probably the most important thing that we can do for ourselves and it took me the first five years after diagnosis, to realize that all doctors other than those who specialise in MS care, just don’t understand that. I think the best example of that is when my GP insists that I needed to go to the hospital for tests, yes I know not everything is down to my PRMS, but I more than they, know that a visit to the hospital is going to make everything else that is wrong with me worse. I will lose my balance point for something I and they know in their hearts, is yet something more that my PRMS is doing to me, the tests are nothing more than box ticking. Harmless for the fit, life destroying for those with progressive MS. Which is why I was delighted when he said he wasn’t going to send me back to the specialists as they too would just keep changing drugs until they found the right ones for me, it is also why I fear landing up in hospital as a patient for anything. Oddly though, this time my body has found something that is almost as destructive, all this waiting, taking odd drugs to my system, testing, hoping, longing and fearing, making phone calls and feeling useless is causing kickbacks all over the place. My balance is so far off now that it feels like it will be impossible to find again, I’m sure I will, but right now my body is a mess inside and out and I am so tired due to the fatigue and the energy that it is all taking out of me and I just made it all worse by trusting my stupid memory.

Adam and I were talking yesterday and we spoke for the first time about both our fears that I might land up spending some time in hospital if this whole thing with my bowels didn’t change rapidly. It was the first time that Adam voiced his real fears of me being in any hospital, it wasn’t for some reason what I thought they would be, I thought because I know what he is like, that he would be worrying about continuing to work whilst managing to get back and forwards to the hospital on buses for visiting. I remember the last time I was in just how drained and tired he became over just a few days and how he went into a panic about keeping the house tidy and having to have it just right for me to come home to, all things that didn’t really matter that much at all. I was sat there ready to tell him this and to say that although I would love to see him daily I knew just how difficult that is when you work and that I would survive if he couldn’t manage to be there. What came out though wasn’t what I expected, he was worried about being able to convince the doctors that I need the high quantities of the drugs that I am on, especially the morphine, or how I live on a tight routine and need to have things exactly as they are for my health, down to my drug routine that probably wouldn’t fit with theirs at all. I hadn’t really thought about it until he said that, but he has a point, hospitals do things their way and they don’t really care what you want or don’t want. The one thing that has always worried me above all others is how on earth I would manage to get the thirteen hours sleep that I need, if you are on a ward, you are lucky if you can get just 5, what with all the noise and the people coming and going, my second was my cigs, especially since using my wheelchair is now so hard. In the last 13 years I have been in hospital 4 times, 2 of them I was lucky enough to get a single room, but other two were hard and I wasn’t nearly as ill as I am now. No matter how they try, our medical system isn’t set up to deal with people like me, people who have a rare and difficult condition that takes over their entire lives, I did think after talking to Adam that it might help him, if I wrote down all the drugs I am on, what I eat when and when and how much I sleep, a care plan if you like. I thought about it and realised that it would make little to no difference, simply because when hospitals are built and systems set up for the care of people, those systems don’t allow for the likes of me. One day the medical profession may get around to talking to each other, but even then, with the pressure on the system and the huge range of knowledge they already have to remember, what is the chances of any of them being geared up for all the rare conditions there are out there? Little to none.


Please read my blog from 2 years ago today – 23/02/13 – Shopping trolley chairs.

I had pushed myself to do as much as I could yesterday in my much shortened available time, as I really don’t like things missed or not done, so instead of completing then playing a game to relax, I had no time for the game. By 7:30 I had made it to the settee, but I was in pain………..

Who needs sleep

I stayed up for my latest night in over a year, well it was the final of “Strictly”, after 15 weeks of watching every week, I wasn’t going to miss it. I may watch 100’s of hours more TV than the majority of people, but I still think it is the best program around and I wanted to see what should have happened many times before, Pasha winning. I know that Adam thinks I have a soft spot for Pasha and I do, but not for the reasons he thinks, that I am sure off. I quite simply not only think he is a great dancer, but I admire him for the fact he found a way out of life in Russia and has made a great life for himself through his personal passion. Some people in life deserve admiration for more than just one thing.

10pm found me heading for bed with a problem, my body thought I was trying to kill it and my mind was whirling with happiness, what they say about not reading a good book runs true for good TV as well, you mind is so busy it just doesn’t know how to switch off. I had taken a booster pill at around 9:30, I had been waiting for Adam to come out of the shower as I was bursting to go to the loo. It was my fault I should have gone as soon as he said he was going to have his shower, but I didn’t want to leave the TV, I still haven’t totally managed to get used to the fact you can pause live TV. When I did get in there, I couldn’t at first get my bladder to comply, that happens a lot, there is something odd about the messages once it has accepted the “hold on not yet” one, it quite simply refuses to obey and defiantly refuses to listen, even when I plea. As it eventually started to run, I was hit in my guts by the same pain as I had a few weeks ago, the pain was blinding and straight away I was shaking and sweating. It was identical, straight across the top of my abdomen and down slightly off centre to my left side, once, twice and then a third time. I thought it was over and did my best to control my breathing and relax enough to let the pain pass from me, but as I eventually managed to empty my bladder completely, it hit me again, I was left feeling as though someone had been kicking me in my guts, a pain I know from a long time ago now, but the difference is only slight. Pain or not the TV was calling and as is always the case when your stomach is hurting like hell, walking become something your legs don’t want to do, but I straightened myself as much as I could and walked steadily back to the settee, I didn’t want Adam to worry or fuss.

I don’t know if it is just me, but when things are bad, I do everything I can to cover it. It doesn’t matter what it is, or were it is, I always want to wait and see what happens and to be honest, there really isn’t anything that anyone can do, pain isn’t taken away just because someone is holding you, fetching you things or any of the array of helpful actions, that actually don’t help. On top of that though there is something to me far more important, I don’t want anyone to ever think that I can’t cope when I can, I want that day when I scream for help, for it to be clear to anyone who is around, that I really do need it, I’m not just making a fuss. By the time I made it to bed it was just the shadow pain that remained and now that I was lying down, I also had the opportunity to prod around and see if I could feel anything, well I found the site of the pain with no trouble, it was still surprisingly tender and totally solid as it has been for ages. I had hoped that it might have been the prelude to my bowls actually working by themselves, but no such luck. All that I am aware of now is the racket of every mouthful of liquid I take, it clashes around until it reaches that top line of my abdomen then silence and a dull ache where what ever happened, happened.

I discovered the noisy stomach in the middle of the night, I woke desperate for the loo once again and once again, I had to fight for it to actually happen, but this time there was no added pain. While I was up I went to the kitchen for a smoke and a glass of coke as my mouth was as dry as a sandpit, the array of tablets I take seem to have the power of an enormous sponge. It is actually truly rare to find that I have any real saliva, I have tried the gels that the doctor can prescribe for me, but I honestly found them of little use, far better to just continually take tiny sips of anything wet. At night it gets so much worse, logical really, I wake most days with my tongue feeling like a piece of wood and lips stuck to my dried out gums. I am quite good normally at getting up and dealing with what ever it is that time, without really waking, it is almost a game of sleepwalking, but I was awake because of the fact I had had to apply thought to emptying bladder, something that doesn’t work when half asleep. Within a short time of lying down, the noise started, in fact it was a real racket, not only could I hear it gurgling and thumping it’s way around, I could feel it. Sleep wasn’t going to happen for a while longer that was clear. When I had returned to the bedroom I was aware that the room was freezing, so I left the bedroom door open so that the heat from the hall storage heater would filter through, unfortunately, all it did was to worry Adam. When he too woke a little later, I could hear him wondering around the hall and other rooms, stopping occasionally at the door as though he was listening, I knew he was looking for me. I don’t know where he thought I had gone as I swear I heard him even open the inner door and look at the front door, by that point I was wide awake and I went for a cigarette. I normally do keep the door shut because noise wakes me with ease, but the cold has gotten the better of me a few time recently. I think I have only once managed to go from that point to morning without getting up to shut it, just as I had to last night, within 10 minutes of Adam settling again, he was snoring and the bedroom door was firmly closed.

Two nights in a row, disturbed by stupid things, things that I had no control over, or could have changed in any way. I am so far out of normality that routine feels like a distant stranger and I have already given up trying to work out what my body is making of all of it, there is no point in me even trying. In the past 12 hours I have taken three booster tablets, they are holding the worst of the pain at bay, but not the discomfort or aches and once more I feel like I am sitting in a pit not even wanting to try to climb out and oddly, I’m quite content down here for the minute. Here’s to tomorrow.


Please read my blog from 2 years ago today – 21/12/12 – Fixing the gaps

Last night I actually remembered to ask Adam to sort me out a couple of cards to send to my Mother and brother, he had already done it. He realised that I have forgot all about it so when he was sorting out his cards for his family he added them onto his list. Clearly he has noticed that my brain just isn’t here or up to dealing with very much at the minute and……….