Back to the beginning

I woke up tired, with no reason on earth other than what I do daily online, as to why I couldn’t go back to sleep. It was genuinely, the very first time where I almost did, what I have been tempted to do so often. I honestly, don’t remember ever feeling quite so drawn to disobey the clock and say “To hell with it, I need to sleep.” There has been through all my life, this drive to work, to do things as they should be. It doesn’t matter if it is paid work or just the daily work of life, I always have to do what is right. I know that it started from childhood, from my parents demanding that life ran to two things, the clock and work. Work covered everything from, of course, going to school, homework, working in my father’s business and household chores. It was something I was grateful for, as it gave me a structure to hold onto, throughout some of the darkest years of my life. When I fell into a depression that twice nearly took my life, structure or as I call it now, routine, kept me going. Housework had to be done, the children cared for, the garden kept perfectly, clothes to be made, bread to be baked and the list went on, there was work, and always, more work. When I found myself housebound and working from home, I developed a routine that in many ways, hasn’t changed since. Clearly, part, at least, was governed by the work I had to do for the office, the reports that had to be on time, the bonuses that had to be calculated and so on. More than that, though, I developed the structure of living totally from home. I may no longer be paid, and my hours have diminished greatly, but routine has been, and is still, at the heart of my life. There are hours by which things have to be done, the only one that put’s any sort of pressure on me these days, is writing this. It has to be done before noon, else wise, I know I’m letting others down, and that doesn’t sit well with me, in any way.

Not long ago, I know that I mentioned in one of my posts, that I am now so tired, that I knew I needed more sleep, but I had no idea where to find those hours I needed from. Well, I am beginning to piece things together, that will hopefully allow me to take more time in bed in the morning. My routine has worked so well for me, for so many years, that letting go of any part of it is always hard. I have, though, done so regularly. I have had to over and over again snip away pieces here and there. Reducing this, or that, bringing it down to a size, that I can cope with as my health has slipped, further and further down. For months now, I have been having days when the whole things, just feels too much. The pressure that I have been putting myself under, is once more too much, but no matter how many times I have looked at it, I could find nothing that would allow me more spare time. I have nothing left that I am comfortable cutting away. Then last month, I discovered something, that I hadn’t noticed happening at the time. Every time I have reduced my “work”, I have cut away items from my list of tweets. Over the three years, I have been on Twitter, I have reduced my load from sending out, at least, one tweet every ten minutes, 24/7, down to 4 per hour. No matter how much I cut and tweaked, I never seemed to have any more time. What I hadn’t realised was that the time I produced, was being eaten up by my blog. When I started blogging, I was satisfied to have written as little as 3000 charters, I am now not happy until, I have found at least 7000, usually nearer to 8000. I have often found myself sitting here almost banging my head against the computer screen, as I simply couldn’t find anything else to really write about. Inspiration would appear and my then 5000 charters would explode to 9000 plus. It is no wonder, that I never freed up any time. So this is my first change. There are no longer any rules about how long a post can or can’t be. From here on in, a post is the length, I am content for it to reach. Some might be just a couple of paragraphs, another, much, much longer. From here on in, my daily health will govern what I do, rather than some mad rule about characters.

Outside of what I do online, my biggest problem for years, when it comes to getting enough sleep, is Adam. He is so bad at getting up and has since we married relied on me, to see he was up for work. I know for a fact, that if I just woke to see him out of the house, then went back to bed, it simply wouldn’t work for me. Without a doubt, that is the logical point in the day to extend my sleep, as it’s the point where I don’t want to wake. The sleep I take in the afternoon, is often not true sleep, more a doze, and in fact, if I were to sleep an extra hour in the morning, I probably wouldn’t even need to try again later on. I am so used to dragging myself through the mornings, fight tiredness, which slows down everything that I do. On the odd day where I have been awake, everything flows with ease and I complete my tasks with time to spare. Just being able to sleep one hour longer, could change things for me totally. Last night, I broached the subject with him and we have decided, that we are going to give it a go. He will set his alarm on his phone, which with my earplugs in, I don’t hear. There are a lot of things that have changed in our lives, that I wasn’t allowing for when I was worrying about him, not waking for work, the biggest being just simply, maturity. I am still going to set my alarm, but for an hour later, to start with and see how it goes. Any longer than that, I put myself outside of what my pain medication covers, trust me, waking every day in pain, isn’t a good way to set yourself up for anything.

I can’t live without routine. Although I had already removed the time restrictions for all tasks, I hadn’t looked a the most logical change of all, the time spent writing. I honestly don’t think anything will be lost, as on my inspired days, the words flow freely and fast, really fast. If there are any rules about writing, that is probably the one above all others, that should govern it, internal inspiration. We all need routine, but it should be us running it, not it running us.


Please read my blog from 2 years ago today – 19/12/2013 – Just another day

I woke this morning almost unable to move, every part of me was not only stiff, it was also in searing pain, especially my back just above my waist. I kept trying to find the strength to lift just one side off the mattress…..





What is going on?

I’m tired this morning. That feeling of heaviness that makes your entire body just want to collapse and give up. It’s a tired that leeches all warmth, even when you sit in front of the fire to eat your breakfast, you’re still cold. Ten minutes of direct heat and the result, a warm front and a freezing back with nothing in between, and within seconds of moving, freezing again throughout. I didn’t sleep well last night. 4 am, when I woke desperate for a pee and feeling a pain I know all too well, that one that says somewhere in the next 12 hours, I will be moving my bowels. Why do they have to go through such an aggressive announcement period? Quite honestly, I don’t need more than a few minutes notice, just like everyone else in the world, but that would be too easy for my body. No, it has to ruin the one thing I need the most, sleep. Three and a half hours of lying in bed with only fitful sleep is enough to bring me right down the next day. Right now, despite the fact I crashed my way through the house in a desperate dash to get to the loo, once more proving that filing the top off my scab, has made it safe. Or the fact that I have had a meal and done all I can to make life right, all I want is more sleep, hours and hours of sleep. I may not run my life on a tight minute by minute routine any longer, but that doesn’t mean I can throw my day out the window, and just head back to bed. If I did, then the whole day will be a nightmare, followed by a night that wouldn’t be much better. So I do the sensible thing, I put up with the not so nice, to avoid the totally horrid.

This is the draining bit, the part of all chronic illness, that gives it, its bad name. Those days that often turn into weeks of feeling no more than half alive. I don’t write about them that much, as they are the drudgery of illness. Those parts, that none of us dwells on, as if we did, we would see no point to any of it. We brush it to one side and look for the good, even finding it and bringing out a smile for those around us. But inside, deep inside where it really matters, we are drained. To me, it is where life gets scary. It would be too easy to give in and to climb into bed and hide, in the hope that it will pass. No one out there, not even Adam, would blame me and that is even more scary. The world would allow me to wallow, in the mistaken belief that my health had reached a point where I had to stop and rest. The truth would be, that I was taking advantage of a situation and by doing so, I know that I would open myself up to feeling worse and worse. I don’t believe in this concept of fighting our health, but I do believe in not just giving in to it. Some while say, that it is a very fine line between the two, or that I am splitting hairs when I separate them, but it is an important difference. Fighting to me, implies an active aggressive act, something that I don’t have the slightest belief works. Aggression is a pointless response to anything that is bigger, stronger and more aggressive than you will ever be. It makes far more sense to stand your ground, work around it, with it and at times, even give in to it. You don’t beat a bully by becoming one yourself, any more than lying down and letting them beat the living daylights out of you, will stop them from coming back and doing it again. My body got the upper hand last night, leaving me feeling like death warmed up, but that doesn’t mean it has won, I’m still standing and I don’t intend to lie down.

Sitting feeling like a zombie isn’t a good idea either. For me, the only way that I have found that works and gets me through days like this is to keep going. It’s counter-intuitive, your tired, but you push yourself to do everything that you normally do. Even listing extra jobs, ones that don’t have to be done today, they could be put off, but by adding them to your to-do list, your plays the phycological game that illness really is. It is a constant case of outwitting it, rather than outmaneuvering it. By making life as close to normal as ever, there is just a chance, that you can jump your way out of the pit you are sitting in. I probably won’t have my shower this afternoon, but by telling myself that I will, well it means I have to keep moving, just to make the space required. If I slow down now, allow myself to just sit and stare at everything around me, or even just the screen, it won’t happen. I could be that zombie that wants to take over, I could sit here and type a few words here and there, eventually making my way to the end. Or I can kick myself up the backside and I can push those words to appear and my fingers to run, not dawdle. I usually land up somewhere in the middle, but that better than landing up still staring at my unfinished post an hour from now.

It is getting harder as time goes on, to find that inner strength to push myself. As I said the other day, my routine has been trimmed and trimmed and trimmed again. As there is a difference between the odd bad day, and a constant draining of life that doesn’t refill. You can’t push forever, that just doesn’t work any more than fighting does. Recognising which is which is hard. I found it almost impossible at first, and I probably did push for too long on occasion, but I did one thing right, I learned. Just as I told the MS nurse when he was here the other day, I know the point were outside help isn’t far away, but it’s not here yet. Neither is the point where I once more have to adjust my life again, but I have recognised from the last week, that I may need to start thinking about it. My body is screaming at me more and more that it just doesn’t want to play my games and the ones my illness is offering to it, seem like far more fun. Oddly, it is lunchtime that has reinforced those thoughts. The fact that I am not only content to stop and take a break, but happy doing it, is screaming at me. I knew that when I found myself within two weeks, mentioning it again. As you know my writing is more mental vomit, rather than thought out and considered facts. I sit here, turn the tap and brain flows out onto the page in front of me. Because I write that way, it all to often tells me things that I hadn’t either noticed or consciously considered. It threw it into my writing and has activated a train of thought that is clearly going somewhere.

I think I need more rest, not more sleep, but more rest. Time to just do, to be brainless and motionless. Time to relax. My body is forcing me to slow down in ways that I hadn’t expected. I thought that the next sign would be just like all the others, that I would go through a spell of being drained and washed out and never completing my day. That I would then like all the times before just trimming my routine and going on doing the same things as always. Suddenly, I have a need to do something different. To open up a new part to my daily life, but I don’t have the slightest idea what. I can’t spend an hour a day sitting in front of the TV eating. That would be disastrous in so many ways. My wheelchair has pushed me into making changes, ones that I wouldn’t have even considered without it. I am even finding an odd pleasure in my shorter breakfast break and my two 15 minute drug routines. I am at a loss as to what my body and mind are trying to tell me. I can’t stand just sitting around doing nothing, yet it seems to be what my body is responding to best and my brain, is trying to push me into doing. By being forced into doing things differently, I am finding physical and mental responses I never expected. I don’t have the slightest idea of where this is going, I guess time will tell.

Please read my blog from 2 years ago today – 09/10/2015 – Searching for the simple and normal

I made the single most horrible mistake the other day after my shower, I didn’t wrap the towel around myself tightly enough and I had the misfortune of being in front of the mirror when it fell away from my body, resulting in my…..

Eat what you want

It doesn’t happen often now, but Adam managed to snore me out of bed this morning, despite my earplugs. He seems to go through phases of snoring, just as I go through phases of pain. It’s just a shame they don’t both happen at the same time, I wouldn’t mind so much then. No matter how much sleep I get, it remains the most precious substance that I know of. I know, because I have done it in the past, that I can cope for days, if not into weeks without out food. Ask me to lose just a couple of hours sleep these days, and it feels like the bottom of my world has dropped out. I lay there for nearly two hours, trying to sleep and just hoping that he would stop long enough that I could drift back into a deep sleep. No such luck. 6:30 arrived and he was still trying to bring down the walls. I gave up and made an early start to my day, with an hours sleep pencilled in for after he has gone to work.

I know that yesterday I had a list of topics that I wanted to write about and managed to write about none of them, but this morning, I can’t remember the list. Before anyone says you should have written it down, I did. I also decided to tidy up my pile of papers that sits beside me at my desk, guess what, I throw out? I have given up all hope of the connections that my PRMS have eaten apart my brain of ever finding a way to join themselves back together again. I find it odd that nerves can be clearly severed like they were when my hand died several years ago, and managed to repair themselves, yet those broken connections in our brains, never do. Surely, the possibility should be the same? Yet it has never happened to me, nor have I heard anyone else saying that their memory has repaired itself. I guess that it is one of those pipe dreams we all have, but never receive.

I know for a fact that over the last few days, it hasn’t just been my memory that has been getting to me, no it has gone into league with my concentration. I am all over the place lately. I even found myself reading recipes for granola. Why? No, I really mean WHY? A. It’s far easier to just buy it, B. I know how to make it and I definitely don’t need a recipe. C. What led me to be even looking at? D. I don’t remember searching or anything I was just there, how? That’s just one example, the last few days have been littered with them. Yesterday, I went into the kitchen to fetch something, no I don’t know what, but minutes later I found myself clearing out all the out of date cans and so on I found lurking in one of the cupboards. Give my mind the slightest opportunity and it makes a bid for freedom. Luckily, I haven’t exactly had anything outside my daily online contributions to make.

When my brain is like this I have to start playing games with it just to keep it in line. The first one is simple. Whatever screen I am working on at my PC, enlarge it to fill the screen. If I can see even just the edge of another screen or an icon, I will without fail, click on it and be off somewhere else, doing something I shouldn’t be. The other is to take my glass of coke with me when I leave my desk to do something that will require more than one trip. I take it with me for one simple reason, as due to my drugs, my mouth is always dry. I expect putting something in the oven is the best example. Once the oven is on, I leave my glass there in the kitchen. It doesn’t matter then if I wander off or get engrossed on the PC, due to my mouth. I will miss that glass within 10 minutes and then every 5 to 10 minutes after that, which means my lunch or whatever it is, never burns any longer. A lot of the things we blame on our short-term memory is really down to our lack of concentration. Like the glass, it is a case of finding something that will draw you back to where you are supposed to be. I used to find that my cigarettes were a good one, but then I decided to buy four smart lead crystal cigarette boxes. There are two in the living room and one in the kitchen, I kept telling myself I bought them just for their sleek look, I didn’t, I got fed up of walking around the house looking for my cigs. The fourth case, for those who are wondering, is in the bathroom, it doesn’t hold cigarettes, but all those silly little things I would otherwise lose in the bathroom, like tweezers and eyeliner pencils. Oh, and they do look really smart and special, why ever I bought them.

Just because you have a poor memory and little concentration, doesn’t mean there isn’t a way to make it work for you. Losing our memory isn’t the same as losing our brains, we just have to use it. Our intelligence is still intact, despite how it feels at times. Everything that we appear to be getting wrong just needs a rethink, we can’t expect our lives to just keep going as it always has and if every trick fails, use someone else’s brain to fix it. Just like I do now for taking my meds and being reminded to take a shower. I exhausted every other option, there are no other choices left, so Adam now makes sure that I do things at the right time. That feeling that you have become a waste of space, that you are nothing but a burden on others, is real, It is cruelly real, as it eats away at you and the more it grows the more we begin to believe it. That is the reason that I have put so much effort into finding tricks that work for me. There is such an amazing elation when you succeed in beating it at its own game, just going head to head with my own brain is slowly becoming an interesting pass time. Clearly there are days when it will win, times when I don’t stand a chance of outsmarting it as it has just closed down and provides nothing but a total blank. Those are the days where I have learned just to give in. It’s not always easy and yes I get wound up and frustrated, but I only feel that way for a day. The next day it’s back to working on how to keep control in the future.

Once I was sure that every battle that presented itself, whether it was physical or mental had to be fought there and then, or it had won. I was wrong. There is a fact I have learnt, nothing ever happens only once. There is also another, no matter how bad you think your memory or mind is, it’s never as bad as you believe. Working on those two principles alone, means that you can work slowly and steadily on fixing whatever the problem is. That way, you are ready for when it happens again. You might not remember your solution the next time it happens, but after you have beaten yourself up a few times for being so stupid, you slowly remember and eventually have a new tool in your armoury. I probably take the greater fun out of finding fixes to my life, than some might. I have always been a lover of problem-solving games and puzzles, even my last job was mainly just that, problem-solving and fire-fighting daily. There is also one other fact I have learned, learn to relax. The more you let you memory or the frustrating it causes get to you, the worse the whole situation becomes. I know some people say that if you find yourself in a room with no idea what you are doing there, that you either backtrack, or you stand there until you do remember. Neither work for me. I just do something else. To me, there is no point racking your brain and beating yourself up. Relax, tell yourself it doesn’t matter, as it probably doesn’t, after all we aren’t in charge of nuclear weapons or anything important. Just keeping calm can be enough for your brain to surrender and supply you with the missing information.

No matter what we do, there is no total substitute for our own once perfect, well almost, brains. We can’t get away from the simple fact that once damaged, it will always be damaged. I could come up with a million tricks, but tomorrow I could wake to find that not only have they gone, but so has another large chunk of my mind. PRMS is like that, it doesn’t care if it’s my body or my brain, it does whatever it wants and that is always going to be the overriding fact. As it does, all I can do is fire-fight and hope that what I put in place, is enough to compensate and then, I get on with the rest of my life.

Please read my blog from 2 years ago – 11/08/2013 – Truly symbiotic humans?

Sunday and another day to wonder why is Adam awake? It is the weekend but we are actually spending the day time hours of two days in a row, together? I am not complaining in any way, it is in fact really nice to see his sat on the settee with his laptop rather than drowning…..

It’s all about sleep

There is nothing in this world as wonderful as a new pair of earplugs. I only use a set for a couple of days then change them, but last night their impact on what I could hear, seemed somewhat marked. I know I have said it several times, but I so wish I had bought both them and my eye mask 40 years ago. Just like there are occasions that you step into the shower it is so perfectly balanced in temperature and strength, that you just don’t want to have to leave it. Last night, when I put my earplugs in the closing off the outside world, was sublime. There is a perfection, even a joy, in finding yourself in total silence. Add the total blackness that the mask supplies and the comfort of my bed with the duvet fluffed and settled over and around me, and my isolated cocoon is complete. There is nothing like being allowed to be totally undisturbed by anything other than your own thoughts. Isolated and totally free of interruption. I was so ready to sleep last night that finding everything just falling into place without effort was wonderful. I didn’t lie there awake long. Just long enough to appreciate how good it all felt and to run through the day before drifting off into glorious sleep.

I was woken by the unmistakable demand of an over full bladder. No matter how it complained, I was finding it incredibly hard to find the conscious levels required to actually move. It is a feeling that I know all to well and it’s one that I really don’t like. It’s almost as though someone has drugged me and I am having to fight my way to a position where I could show I was alive. It is a real struggle, one that takes several attempts to actually achieve. Pulling myself to the surface over and over, then failing as I slipped back into a fitful sleep. Even when I do manage to actually move and pull myself up into a sitting position, I can’t even then actually move with ease. I sat there this morning feeling terrible and wishing that I could just lie down again. The world was moving, I could feel it although my eyes were shut, I also knew it wasn’t moving at all. It’s a feeling of dizziness but it is totally in my head. So much so that my actual brain feels as though it has been turned into mush that is swimming around within my skull. Often I wake to find that the machine that pulped it is still active and thumping in time with my pulse, whilst a strange sort of low whistle sounds in the background. In normal dizziness your eyes confirm what you feel, this has no affect on my vision at all. I was sat there feeling completely wrong and struggling with a simple question that had to be answered before I went anywhere. Pyjamas or just dressing gown? It was just 14 minutes until the alarm was due to sound, but I just wasn’t sure if I should just get up and stay up, or come back to bed for those last few minutes. I decided that getting up was the logical answer and once dressed I headed for the loo.

I have woken many times recently feeling like this, so I knew before I stood that walking was going to be interesting and that I was going to have to walk with care. My balance always starts to swim with my brain, one second throwing me backwards, the next to my side. Staggering along with what I can only describe as a penguin shuffle, is now a well-known start to my day. From doorpost to the wall and onwards until I find the safety of somewhere to sit again, this morning that was the much-needed relief of the toilet. It was a good thing that I wasn’t in a hurry to do anything else, as I swear that every drop of yesterday’s 2 liters of fluid was all there waiting to leave. From one seat to another in the next door kitchen was my next goal, along with the first cigarette of the day. something that didn’t go well. Just a few puffs and I had to put it out, I just couldn’t take it as it was making me feel even worse. I sat in the kitchen as I have found myself doing more and more when waking at night, not just in the morning. I was just sat there doing nothing, unable to do anything might be a better way of putting it. It’s like I don’t actually know how to move, I sit, blank and cut off from everything, almost as though I am about to go back to sleep exactly where I am. There is a numbness surrounding me and it closes in around my brain more than anywhere else. My mornings are becoming a battlefield, this is happening all to often for my liking. It takes time, a lot of time for me to actually start to feel normal. Today, it was just over an hour before the worst of it was gone, but I still don’t feel great.

Jake just called me and when we were talking, I suddenly stopped. It was more than my normal forgetting words or what I was talking about. It was like those blanks that I get when sitting in the kitchen. It was so dramatic a silence that it was Jakes’ voice demanding was I OK that snapped me out of it. I said, “yes I’m fine”, then shut up again as I desperately tried to work out what had just happened. I still don’t know. My brain just stopped. I was suddenly nowhere and nothing, without a clue of how to get back. Even when Jake tried to help me get back on track, I struggled to find anything that matched the words he said back to me. I doubt the whole thing even lasted a minute, but it felt like it went on forever. That is the first time that has ever happened to me. I don’t like it. It somehow felt like a terrifying place to be and I don’t want to go back there. I often got lost in my words or forget what I was talking about, but this felt so different, it was deeper and stronger than anything I have ever known before. It has even managed to leave something behind it, other than that fear that it triggered. It has left me feeling lost. Not just about what happened, it’s a feeling of being lost about everything.

I said yesterday there are so many small things happening just now. I can’t pick one out which as being the most important or the reason behind it. There is nothing I can blame for it either, but what I do know is something is changing and something is growing in what it is doing to me. My right arm this morning was once again not quite right. It wasn’t as bad as Sunday, but it was numb and I couldn’t make a closed fist again. Now, it’s back to normal. The only common string seems to be sleep, all these new things seem to be worse when I wake, which is totally the opposite of how my life normally is. It feels as though I have two different things happening to me right now. My PRMS and this other thing, which I know is managing to make my PRMS worse at the same time. Whatever happened when I was talking to Jake, I don’t know, but I really don’t feel right, even writing is hard. I just hope it makes as much sense to you, as it does to me as I am writing it.

Please read my blog from 2 years ago – 21/07/2013 – First a funeral, then the will

Well the plans are started and we have talked through a range of things that we agree has to be done so that we can both move on and we can both make the most of the time we have with each other. Strangely it wasn’t……

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…..