From throat onwards

I had a lot of kind people yesterday on twitter suggesting diets and different things I could take to help with my intestinal problems. I think over the years I have tried as many different things as I can think of or have found to see if they might help, but the issue isn’t what I eat, but the fact that my the nerves from my throat down have huge issues and are just not doing what they should, pushing the food through me. That is why I am waiting to see the consultant again, as neither diet or medication are making the slightest difference. Just like the rest of me, the nerves aren’t passing on the messages they are supposed to and the result, well is nothing happens as it should.

By the time I had to take my night time meds, I knew there was no choice as to whether or not I needed to take the higher dose of laxatives, I had to. The day passed without anything happening, no pain, no accidents, just incredible discomfort and no inclination to go to the loo at all. I had spent the entire day shifting around in my chair and at times being forced to try and wonder around to ease it, as my stomach felt as though it was a pumped up balloon. Honestly, it reminded me of first stage labour when there really isn’t anything happening other than you feel as though you want to scream and climb on, lie on or sit on anything in sight all at the same time. After I had my nap, it seemed to settle a bit but I was still fidgeting enough for Adam to ask if I was OK as it was clear I wasn’t. Despite, the fact I really wanted a good nights sleep and the fear I have built up towards taking it, I knew I had to. It is surprisingly hard to actually swallow something that experience tells you is going to cause more pain, the first three times I used it, I spent most of the night sat in the kitchen exactly in the state I was in all yesterday, but with the addition of incredible pain. I know that the dose I took the night before hadn’t caused pain at all, but sitting on my perching stool measuring out and then having to swallow the horrid stuff, was hard. I even sat there for a few seconds just looking at it, before closing my eyes and throwing it into the back of my throat in an attempt to bypass my taste buds, as it’s horrid. 12 hours on and nothing has changed, I didn’t even have the wind of the night before. I am not complaining, but I really don’t understand why I am getting no pain in my stomach for the last 24 hours, it really isn’t normal at all and to be honest, I would be delighted right now if I had just one cramp or spasm, something that felt normal. At it’s very worst yesterday, I would say that it ached, nothing beyond that and I honestly even when lying down, haven’t felt anything moving, not a single thing even wind, which doesn’t mean I haven’t had any, I just haven’t felt it.

You would think that after swallowing differing numbers of tablets, from a couple to a handful, that drugs would be something I am used to, but I still don’t like them. I have gone through so many phases of them getting stuck in my throat, at one point it was so bad that I had to crush everything and coat it in different things from maple syrup to yoghurt just to get them into my system. When they started giving me slow release medications, well I had no option other than to swallow. I have lost count of the number of times that I have had to dislodge them and bring the back into my mouth to swallow them again. It is part of the reason that I have whatever drugs possible in liquid form, they may not taste nice, but they don’t get stuck. Oddly, I seem to often have more problems with the little tablets than the big ones, just like everything else with this mad condition, it isn’t logical, but it’s just the way it is. In my case, it is on the left side of my throat, I used to think that I was imagining things and that it was impossible to constantly get things caught in the exact same spot and when I had mentioned it to doctors they had sort of dismissed it. One of the nurses I saw when I was in hospital once explained it to me, apparently if the coordination of the muscles used to swallow is out of sink, it can form a small pocket-like space in which things can get caught. Once something is caught there, the muscles can’t move properly so dislodging it is really hard, that bit I already knew. If you use a stethoscope and listen while someone is drinking, you can actually hear the difference, as the liquid is caught and released. Food and tablets can get caught there for hours, I have honestly brought things back into my mouth that I ate ages before, despite having eaten and drunk other things afterwards. It can be very uncomfortable and even coughing won’t dislodge it, it seems to release when it is ready and not before. So far, it is like everything else, phasic, as it is caused by my nerves not working rather than a muscle weakness, but like every other muscle in my body, it is getting weaker and the amounts getting caught are growing. In time it could actually get so bad that it can make it hard to eat anything, not to mention the growing embarrassment factor as you spend more and more time twisting your neck and trying to either swallow or regurgitate whatever is there.

Last night I actually slept quite well, waking just once when Adam came to bed and did his usual act of practising his trampoline moves before finally choosing a position in which to then deal with his night time flees and eventually settled before going to sleep, when I also returned to my slumbers. I don’t know what time he came to bed, but it didn’t feel like it was that much before the alarm actually sounded. I don’t really don’t know how he does it night after night, but he falls asleep while lying on the settee watching TV then eventually wakes and comes to bed for the last couple of hours or so before he has to get up for work. I have never been able to sleep with any noise what so ever and I so wish I had tried earplugs before, as since I bought them, I have slept wonderfully. Mind you, even before them, I have never had the slightest problem going to sleep, it has always been a case of head on the pillow and off in seconds as long as it was quiet. The vivid dreams and pain have been the only sleep issues I have ever had and they always wake me in the middle of the night. I have now had three nights without vivid dreams, I did take a booster yesterday around lunchtime and just as I expected, taking one is not a problem. It really looks as though I am just going to have to be careful how many I take and at what time, definitely not just as I am going to bed unless there is no other choice.

Read my blog from 2 years ago today – 30/04/13 – One of those days

Tuesday morning and another day of shopping to deal with. I have to say this is one of the tasks that turns up fortnightly and although I am usually really happy to do it, today I just wish it wasn’t happening, but it’s feels like just one of those days. I don’t feel bad or anything, I just can’t be bothered, why, because I am human! I don’t know any more than you would were feelings like this come from, but they really are a pain………

It’s all change and all wrong

I woke in the middle of the night this time, not because of any dream, no this time it was fear that woke me. It is no secret that I have huge issues with my bowels or that last Friday night was not the greatest night, I was up several times and as I always go the loo when I am awake at night, too many occasions of going back to bed then having to get up again, so when I woke I had no desire to go to the loo and I headed off to just start my day. At around 11 am, just before I went to wake Adam I went for a pee, to my shock when I dried myself I found far more than just liquid, I didn’t have the slightest idea how or when I had soiled myself, but I had. In the last couple of years, I have gone through spells of mild incontinence but it has always been identical, I am totally unaware anything is that low in my system, but the second it touches my skin, by clenching my buttocks I can make it to the loo without any further issues. Saturday morning was totally different, not loose and I felt nothing, I hadn’t even passed any wind, not the slightest thing, I couldn’t even be sure when it happened. It could have been anytime from my last visit to the loo during the night, or while I was in the bathroom. It was that realization that prompted a horrid picture in my mind, that it had happened while I was asleep, I knew it couldn’t have been that bad as there was no smearing or anything like it, but I just couldn’t be sure. Somehow I had to get Adam out of bed and check that there was nothing more left behind me on the sheets, to my relief everything was clear. Nothing more happened that day so I put it down as some odd one off and nothing to give another thought too.

Sunday afternoon it happened again and again there was nothing at all that I had felt, not wind, not movement not anything. Then again on Monday, just after my lunch and all of them exactly the same and around the same amount. I have been taking all the drugs that are supposed to help me control my bowels, but I still haven’t had any luck in getting them to move, despite taking the stronger laxative for three nights in a row. Last night after finding yet another accident just before Adam came home, I had no choice other than to take it again last night, I woke in the middle of the night, luckily not making a mess of myself, but because I had the worst wind in history and it was leaving with force. I had taken the higher dose last night reluctantly as every time I have it has caused me great pain, I felt kind of trapped into it as what else could I do. With my bowels refusing to clear yet leaking small amounts which I can only guess were appearing very slowly rather than in one movement, the only way that I could see to stop the accidents was to force them to clear. For some reason, the pain didn’t appear and the expected wind was double anything I have had in the past, even though I was sound asleep, the second I woke I knew what had woken me, I honestly thought that I had messed myself badly. As I woke more wind escaped me and I knew then that I wasn’t feeling it internally at all and it wasn’t until it touched my thigh that I felt anything. My fears were misplaced, but the damage of waking me had been done, so once again I was sat in the kitchen having tried yet again without luck to clear what wasn’t either low enough down in my system to get rid of or that my muscles were totally unable to shift. I sat there for about another ten minutes trying once again work out what I could do about the whole thing as the way my stomach felt at that second, nothing was happening. I couldn’t feel any internal movement, no pain, no spasms, nothing internal at all that could possibly mean that anytime soon I would be going. I did consider taking another dose at that point, after all it was only just gone midnight, but I thought better of it, fear of causing myself pain is a very sobering thing and no matter how desperate I am, I still try to avoid it whenever possible.

This morning, well I have moved another small amount and the wind that had me out of bed and as close to dashing to the loo last night, has totally gone. What hasn’t gone is the pain in my diaphragm, the internal pressure is still pushing on it and I am once again at a loss as to what to do, I don’t want to take the boosters as I explained yesterday and I really don’t want to run the risk of another disturbed night because of what that does to my health in general. It is now four full months since I have managed to go to the loo without drastic measure, four months of pain in both my diaphragm and my stomach, four months of disturbed nights and four months in which to become totally fed up with the whole thing. I just wonder how those doctors at the hospital where I am still waiting to go would like to live the life I have done for the past four months?

I know there are a still a lot of hours until I am at the point of having to decide just what to do and what meds to take tonight, a lot of time where something just might happen, but I know my body rather well and if I don’t go again within the next three hours, I won’t. Clearly the nerves in my intestine aren’t getting any better, they seem totally incapable now of just doing what they were made for. In January, the problem started with those huge lumps I couldn’t pass, lumps caused as it was compacting throughout me, then I eventually after a month of talking to my doctor I was prescribed meds that would soften my stools and for a short while there was an improvement. Now, they seemed to have become much worse, they can’t even shift what is soft and should pass without issue, but nothing is happening the way it should. The pain the other night, well that was caused by all this, just as it was back in January and February. March wasn’t too bad, yes pain, but I could at least once a week clear my insides, now I can’t even do that taking the highest dose of laxatives which just two months ago had me running to the loo several times a day and often into the next day. Once more my insides are at a stand still and the last few days are yet more proof of dead nerves, nerves that aren’t responding to anything even things that should have an instant impact on my brain. Friday was the last time that I felt pain in my stomach, since then the all the pain has been in diaphragm, that alone is not right, I know I should be feeling pain as almost nothing has changed since then, yet all I feel is this never-ending pressure. It is that black and white, one day in agony all over the place, the next nothing. Something has really changed and I can’t say I like it, at least when you feel pain, you know it’s alive.

Read my blog from 2 years ago today – 29/04/13 – Accidents happen

I had an accident on Saturday afternoon the has left me still slightly surprised that it happened, yes there was a large spoonful of stupidity in there and it could have happened to anyone, but it happened to me. I’m a lifelong smoker and I have used a zippo lighter throughout the majority of those years, so I know all too well how to fill and use one safely. So the fact that I filled it and then nearly set the house on fire, still leaves me…….


It is now two whole pain filled days without my booster pills, but the good news is that I haven’t had a single vivid dream, now I know for sure the reason for them, I can factor it in along with all the other choices that I have to make when I’m in pain. Last night I was so tempted to take one, but I really had to have those free hour and two nights sleep to be sure, it does leave me with a problem though. I have had the Morphin booster pills and have been using now for over 18 months, prior to my stepping up the number I took in each day due to the pain being caused by my stomach, I never had the slightest problem with dreams, so I am reasonably sure it has to do with the number of them I take in any 12 or 24 hour period. This, of course, means that I have more testing to do, but at least I have the reason for them. Life is always so easy with hindsight, but it was in January that I suddenly started having broken nights and dream, I never had a bad nights sleep prior to that so it couldn’t be more black and white if it tried. Hindsight, also has another thing that comes with it, feeling stupid that you didn’t make the connection sooner. I can’t believe that I was so stupid or that I spent so many broken nights sitting in the kitchen having a cigarette trying to work out what was wrong with me, or why I just couldn’t shut my brain up. All those nights and the cure was so simple, it was those damned tablets. I freely admit that I have been reaching for them more and more, not just because the pain has been worse than before, but I had discovered the one thing I feared that I would get fuzzy headed, didn’t happen. It seemed so simple when the pain levels got beyond what I could bear for just a few minutes, I had developed the attitude of why put up with it when one tablet changed everything. Now I am going to have to put up with more pain and just see if it will settle by itself before taking anything for it, but that way when it is really bad, I can take them without losing sleep.

There is something odd about sitting somewhere in pain and doing just what you know you have to, put up with it. I’ve been doing it for years, but just having those few weeks of freedom to remove it to a livable level, well they did have their up points, but I discovered yesterday that they were also covering up other things. Pain control works on your whole body, not just the area where you have pain and all those so-called targeted relief products, well they aren’t, that is just marketing, a fact that I saw confirmed on TV the other day. I never knew how to prove it until now, but if you look at the back of the pack, you will find a license number that they are produced under. Every drug that shares the same number has to identical, no matter what the marketing man calls it, be it the cheapest or the most expensive, the license number gives away the truth. So save yourself a fortune and buy the cheapest the result is identical anything else is just placebo. I have always wondered what my drugs might hide and what is really happening inside me, but the one thing I never expected was to find things on the outside. I have heard people say that they “were in so much pain that even their hair hurt”, something that I didn’t only think was an odd thing to say, but actually impossible, I have discovered that in some ways it’s not. All I did was run my fingers through my hair and over the scalp at the front to move it out of my eyes, to my total shock it hurt. OK, it wasn’t my hair but it wasn’t my entire scalp either, it felt like it was every few hair follicles, my disbelief was such that I had to do it again and sure enough my “hair” was hurting. I have been aware of heightened sensations over my entire head from time to time, but clearly the higher pain relief has also been dampening sensations caused by my nerves as well. Putting on my face cream has shown me that my forehead is losing sensation other than numbness which is now the reaction to touching it, to the extent that I can draw a finger across it produces a numb line, which slowly returning to normal over the next few minutes. The rest of my face keeps breaking out in patches of tingling and itching all that I knew were there, but not taking the booster in the last two days has shown me that it is far more active than I thought and it’s not just sensations over my head, but across the whole of my body. It is almost as thought the sudden removal of the extra Morphine has been greeted with a party of reactions from almost every nerve I have, from spasms to irritating itches, my skin and body has been going mad. Not that I am going to try it, but I can’t help wondering what I would feel, if I stopped taking all my meds, as in an odd way, I don’t think I know the half of it.

Bodies are strange things and I know mine is stranger than most, but I would never have believed that those odd sensation and pains I was living with in my 20’s, could ever get to the point they are now and I am only experiencing a muted version. I hate to think what the lives of those people with my condition collections were like in the past or are like in countries where either you buy your drugs or you put up with it. I suspect that suicide numbers were and are raised for that very reason as no matter how strong people think I am or how much I believe I can put up with, I don’t think I would be here either. Personally, I won’t have anything to do with illegal drugs but, in this case, well I can fully understand why some might turn to them. Like so much in life, it is down to personal choice, no one should have to run the risk of being criminalised for simply finding something that allows them to live a more normal life. There are right now countries in this world that if I arrived there with just the legal drugs I take daily because they are prescribed and I need them and even thought I had just what I need for my stay, I would be seen as a drug runner and be put in jail, yet without them, I would have no life. Every country has the right to its own laws, just as every person has to live within them, like it or not, for some of us we have the choice to go there or not, but what do those who are born there do when every door is closed to them, my heart goes out to them. As I said the other day on Twitter, “Even though we live with #chronicillness, just remember one thing – It could be a lot worse”, it really could be.

They say they are working on a cure, it will be a cure that will probably be given to those who can afford it first. In an odd way, it will be given to the people who actually need it the least, we have options, it is those without option who need it the most, but will probably be the last to even know that it exists.

Read my blog from 2 years ago today – 28/04/13 – Gaps prove the loss

I wish more than anything that I had a tool that would record my thoughts as I cross over into sleep. I know without any doubt that every night I write in my mind the most beautiful and most profound statements, so far above those I actually write here. Before someone suggests that I take a notepad with me and writing the best of them down, well that would mean……….

Stoic or stupid

I just made a mistake, otherwise known as breakfast. Less than 10 minutes from swallowing my meds and eating my breakfast and discomfort has changed to pain and I am getting really fed-up with the whole thing. There is an odd thing in life that I was first aware of just days after my first son was born, we forget pain with amazing speed. I suspect it is another one of those things that are hardwired into our brains as if we couldn’t forget it, we would do nothing, I for one would have given up eating years ago. Seriously though, it is something we all do and there has to be a reason behind it, I know that if I can get just a few days peace from the pain inside me that I am a much happier person and it isn’t until it returns that I remember with clarity what is so awful about the whole situation. Those days of peace seem to wipe clean my memory and I develop an attitude of this is OK, I can manage this, just like it used to be years ago when there would be weeks between bad spasm and I appeared to be fit and well, my memory of the flares and progression would vanish. Somehow I have held on to that ability, even if the time when I am free of something is just a few hours, my mind seems to wipe it out and I return to being myself the one who wasn’t scared of taking the next breath or twisting to reach something, even occasionally the one who could walk and still look like a human. This morning when I woke there was discomfort, no pain, just the crushing pressure that never leaves me in peace any longer and I didn’t give it a second thought. I got up, dressed and set about my day, once Adam had left for work, I went to the kitchen to get my meds, collected my breakfast and headed to the settee to sort out the programs I want to record this week. Not for a moment did pain enter my head until I was almost finished and was ready to head back here, then the pain hit and everything from the past few days flooded back in as though there hadn’t been any time without it.

It may sound like something that would be a joy to have, in some ways it is, but it is also the reason why I hate doctors, well not so much them, but the fact that when I am face to face with them, all the reasons that took me there have vanished and I just can’t put the passion of how it feels into my words. Many conditions don’t show themselves in every minute of every day, so much so, that I actually wonder how many doctors actually see patients who are displaying their symptoms while in their consulting room. I have actually built up the huge reluctance to actually seeing any of them face to face, it is actually now so bad that just like the other night when I couldn’t break the pain even after taking all my meds, that I was more willing to take an extra dose of Morphine, rather than pick up a phone and talk to one. I was terrified that they would come out to the house or worse still, send an ambulance to take me to the hospital, only to get there and find it had all settled again and I had nothing to show. I know that some of that is down to the fact that I wasn’t believed for so many years, just for that very reason. By the time I got to a hospital for tests, usually weeks or months after my GP asked for me to see a consultant, all my symptoms had died down, as the flare was over. When I know that the pain normally last just a few hours and it settles back down to just the remaining discomfort with small peaks of pain, well I am sure that my reluctance to ask for help even when it is at it’s worst, is understandable.

There is one more factor that I believe plays a huge role in the whole thing, I think the longer we are ill, the more accepting we also become. I know without the slightest doubt, if I had been in the sort of pain I was in the other day just even 5 years ago, I would have called an ambulance, convinced I was dying. It is one of the things that is so wrong with chronic illness, we develop this attitude of “I don’t want to make a fuss”. It starts from the second we get our diagnosis when we know that we are going to spend the rest of our lives ill and that the only way anything is going to change is downwards. There is something in there that etches itself into our brains, something that says we have to be stoic and bear what is ahead without giving into it. In the past, I have put this down in part to my upbringing, all those years when I wasn’t allowed to be ill and I was taught to get on with it, but it actually goes much deeper than that. I don’t know exactly where it comes from, but there is a huge dose of, if they can’t cure me than I have to survive it, some call it strength, but I question that as well. Is it strength or stupidity to put up with something that is unbearable? No, they may not be able to cure us, but surely if they fully understood just how bad it is they might be able to do more to help with it. It is really hard when you have spent as many years as I have just dealing with it all by myself, to reach out and ask the professionals for help, especially when you know that the truth is they can’t really do that much, other than maybe take some more of the pain away, something I did myself.

I know I have asked this question before, but when is the point that you stop dealing and actually make that phone call? No one has given me parameters within which to work, points that when crossed actually mean that you shouldn’t work it out yourself and do the sensible thing and scream, loudly. I almost fear actually telling them what happened this weekend as I am sure the next words out of their mouths will be, “Why didn’t you call?” Well, how many reasons would they like?

Read my blog from 2 years ago today – 27/04/13 – 12 hrs and counting

It happened! That thing I’ve skirted around and feared to write as it might have been the last bit of temptation required for my body to make it happen, yet with no invitation at all I crashed last night at 7:45! I didn’t wake again until the alarm clock demanded that I paid it some attention, 12 hours of sleep strangely feel identical to 8 or 10, or even my average of just…….

Instinct, logic or knowledge

Sometimes you find yourself doing something while all the time there is a very large question mark hanging over your head. Like just now, in fact, there should be two question marks not just the one, firstly it’s breakfast time and I just had chocolate cake for mine, which is the reason for the second, as ask me and I will say I don’t like sweet things. I have never totally understood why it is if I have a choice of something sweet and something savoury I will take the savoury always, but show me something sweet that is special, not just a biscuit or a bar of chocolate, I will happily accept it but by the last mouthful, I will be wondering why I put that in my mouth? I know that humans are hardwired into eating what in our modern lives we don’t really need, excess fats and sugars, after all, time of famine isn’t really an issue in the western world, but even when we don’t really like the taste that much? It doesn’t make sense. In many ways, it was that same problem that I was grappling with yesterday, doing the opposite to what we are hardwired not to do, is hard, just as hard as not doing what we are hardwired to. I did have to take a booster pill yesterday as the pain levels had risen all on their own, once they had kicked in and actually taken my pain levels below normal, I took the opportunity to try and stretch out my diaphragm and to gently exercise the muscles that like to spasm the most, just to see if they did later on in the day or even this morning show signs of improving. Unfortunately, there doesn’t seem to be any difference, I think my findings of the day before were simply chance rather than something that might actually help. Having said that, I am going to try whenever my pain levels are artificially low, to take the opportunity to gently exercise some of the muscles I wouldn’t consider doing anything to, as the longer I can keep them supple the better.

I am really not having the best weekend, the pain levels have been flying up and down but following the mad session the other day, I really don’t feel I have anything to complain about, well it could really be a lot worse as I now know. I really hate it when my body goes out of its way to just show me how intense it can make my life, to be honest, I would really rather be in total ignorance as I once was years ago. Every time it reached a new height I used to think this is it, it can’t possibly have anything worse in store for me in the future, I no longer think that way at all, I have learned that it can truly always get worse. I have also learned that no matter how bad it is, I can also survive it and life will go on, as it always settles down and it always returns to a livable level. One of the problems when it comes to writing about pain and its effect on me is just that fact, we all have our own levels and our own concept of just how much pain our bodies can produce and we can actually live through. For me to describe what I am feeling, all I can do is put it across in my words, but if you have never been close to what I am describing, what you will read will be totally wrong. Those who have been through worse will be quietly smiling to themselves, in the knowledge that I still don’t have a clue as to what the future holds and those who haven’t reached this point, will think I am exaggerating or a wimp complaining about what they live with every day. Pain is personal, anyone who has watched several different women on TV given birth has seen that in action, some make hardly a sound, others scream the place down, yet logic tells us that what they are feeling has to be within the same range, yes I know there are variables, but they are still within a certain range. Personally, I know that I very much do feel pain, but I am not a screamer, the pain I feel and the pain I show are two very different things but usually only once I have experienced that level once before and not died. I believe that it is fear not pain, that makes us either a person who grins and bears it or a person who shows every single second of it and there is one other factor which I know changed my reactions, being responsible for children. Once you are a Mum or a Dad or even a carer for a child, you learn very quickly not to show these things as if a child sees your fear, they panic, so we learn to act and it is an act we never stop performing and acting calmly, actually makes you calmer.

I know when I am writing about my pain levels that I often land up noting the amount of painkillers it took to control it, my reason for that is above as I think it gives a better picture of the levels that I am feeling. Most of us know how much it takes to control our own pain and by adding those levels into my post, well I hope that it gives a fuller picture of what is happening to me. Most of us also know that some drugs can cause some odd side effects, I was warned when I first started taking Morphine on a regular basis that some people find that they have very vivid dreams, it was something that I brushed aside and didn’t have the slightest problem with when I was just taking the standard maintenance levels. Every day I know take 70 mg of slow release Morphine twice a day and I have no problem with that at all, in fact, I had totally forgotten the warning I was given and it wasn’t until yesterday that the memory finally managed to get my attention. In the last few months, I have been taking booster pills of 10 mg of Morphine whenever the pain is too bad to handle, normally I don’t take it until I really have no other option. I have what I suppose is a fear, a fear that I will have to raise the levels of the maintenance level sooner rather than later just because my body has become used to it, the doctor doesn’t seem to have a problem with prescribing it for me, as I said it’s a personal feeling. For the last few weeks, I have been having the maddest dream, which for a person who normally doesn’t remember their dreams is a major thing to be able to say. I found myself in bed yesterday afternoon dreaming that I was in bed asleep, not in this house, but in a series of houses that I have lived in, in the past, or that I have dreamed up over the last few months. The dream was real, I mean really real and I can remember every mad second of it right down to someone walking over the gravel path outside my window, only possible in Aberdeen, then being aware the house was warm and blaming it on the storage heater, not the one in this flat, but the one in the flat I lived in when I met Adam. I was all over the place and when I pulled myself out of it, I for a second had to sort my thoughts before removing my sleep mask as I didn’t know which bedroom would be there when I opened my eyes. Vivid was an understatement, it was actually rather disturbing and took me a little while to settle back into reality. When I did, I started to realise just how many vivid dreams I have had lately and that there was a bit of a pattern showing up. The recent disturbed nights and daytime naps, all matched up to my Morphine levels being higher than normal in the previous 12 hours and it was then I remembered the warning. It is something I am going to keep a note of and just double check that I am right, as if I am, well I have another reason for not pushing up my levels of Morphine without a great deal of thought. Sleep is something that is very precious to me, I may need to think twice about do I really need that booster, or can I manage without it. Although my dreams have been vivid and disturbed my sleep, they haven’t been disturbing, the odd one has left me wondering for a few hours what on earth it had really been about, but hopefully I now have the answer.

Everything about chronic illness is a balance and it is up to us to find out what that balance is and how it works for us, no one else can possibly do that for us as it is just too personal. It causes us to spend a lot of time working both with and against what our instincts, logic and our knowledge of ourselves, our conditions and our medications. Life has ceased to be simply in any way what so ever and I doubt that it will be ever again.

Read my blog from 2 years ago today – 26/04/13 – Destroyed in 600 seconds

It’s 9:50 and for the last half hour I have found myself struggling already to stay awake, retreating to bed feels like a wonderful option, but one clearly I can’t take this early in the day. When I woke yesterday afternoon after once again taking a longer nap as I did the day before, I struggled until Adam came home at 7:50pm from work, as he was once again had taken the…….