The start of the beginning

Something has aggravated my diaphragm big style. When I woke with the pain yesterday, I was sure that it was once again down to my intestine. I had been to the loo the morning before. That meant I was due to go again anytime in the next couple of hours. Knowing that, I brushed aside any concerns and I just got on with my day. Sure enough, about an hour after getting up, I went to the loo and the pain subsided. The worst of it was relieved and what remained was my normal background annoyance. I honestly believed that was it, the day would continue without any need for a booster pill. I do my best not to just reach for my 10mg Morphine tablets at the first sign of raised pain levels. I know that a lot of people wouldn’t even give it a seconds thought, but I live by a rule that says I don’t take drugs that I don’t really need. Pain has to be constant and bad enough to make my daily life difficult before I boost my normal background meds. To my surprise, despite having a not totally but reasonably empty intestine, the pain started to rise again within twenty minutes of sitting back here at my desk.

The pain was running along its normal track. Right across the front of me following the line of my lower ribs. Dull across the central strip and reaching a sharp jagged pain near either end. As long as I am sat here not doing anything beyond typing, it is livable. That doesn’t mean that it’s ignorable, just not bad enough to stop me doing what I want to. When you have lived with something unchanged for over 2 years, it doesn’t matter what it is, I have found that you do eventually adjust to it presence. Having said that, there are different levels within what I now call normal and this was above my normal background. I was nearing the end of yesterday’s post when I was suddenly aware that I had without realising adjusted my breathing. I was once again settled into breathing in a very shallow fashion. It used to be not just a conscious decision, but a real effort to make myself do it. Our bodies are designed to ensure we have more than enough oxygen in our system. Making yourself restrict your intake because doing so causes pain isn’t normal, even essential at times. It used to take intense concentration to find a level where I had enough air, but without straining against the already tight muscles. Even then I knew there might be a price to pay. If I didn’t get it spot on, my lungs would take a sudden gasp, that, is a pain no one wants to have. There have been a few occasions where I have found myself shallow breathing on instinct when I was lying in bed, but to find I am now doing it whilst up, kind of surprised me. I don’t know why, as it makes sense that our bodies start to adjust by themselves, it’s just to date this appeared to be the exception to the rule.

All day yesterday, there was no relief from my diaphragm. I did around 1 pm, give in and take a booster. The pain wasn’t only worse, it had by that point spread all the way around me. Still worse on the left than the right and the pain was by then travelling upwards into my armpits and on it’s way triggering intercostal spasms as well. By 1 pm it had reached the point where it was driving me nuts. Plus Adam was by then sitting in the living room. Shallow breathing and talking have never really worked together. I hadn’t thought about it until yesterday, but I think that might well be the reason that I manage weekdays taking far fewer boosters. Monday to Friday, I have no one to talk to all day, so my diaphragm can do what it wants and frequently does. Booster pills may take away the pain, usually, but it doesn’t change the fact that the muscles are still tight and not working normally. As the day passed, the muscles of my chest where determined to remind me at every breath just how difficult it can make things if they choose. Breathing when you quite simply can’t expand your chest is difficult, these so called hugs must once again been coming from a Polar bear. As long as I stay relaxed and calm, no matter how tight, I can keep myself breathing. I know it is probably my imagination, but I have become convinced that at times, I can actually control it right to the point that I am breathing using only one lung. I am sure that is impossible, but it does feel as though that is what I am doing. Between spasms, the odd sudden intake of breath and just fatigue from constantly being controlled, by bedtime, there wasn’t a muscle in my rib cage that didn’t at least contain residual pain. It was another night where I could toss a coin as to whether I went to sleep or passed out.

I have little doubt as to what today will contain, my ribs told me that the second I lifted myself off the bed. A thumping headache told me just how last night was as well. I haven’t had a bad spell like this for a few weeks now. Everything has been surprisingly quite, not painless, or discomfort free, just at a level that I could handle without any thought at all. When I don’t think about things, I don’t write about them. I just wish their absence from my posts actually meant an absence from my life. The biggest thing running through my mind is not how it feels right now, but how it is going to affect me in the future. I have had a growing awareness since the COPD exacerbation that on certain days, I am getting slightly breathless just doing things like walking to the bathroom or kitchen. It’s not all the time and I haven’t been able to pin point what causes it, other than it happens more often later in the day. To date, just as when my muscles go into spasm, if I stay relaxed about it and just breath steadily, it settles down. To date, though, I haven’t actually had both at the same time. I don’t have the slightest doubt that I would manage it just as I do everything else. What I am thinking about is the future where that might happen all the time and much more severely. I am beginning to think that it won’t be a case of one or the other killing me, but a combination of the two working together.

It’s odd how I still persist in trying to keep my different conditions totally separated from each other. I know this particular separation was first caused by the consultant. He did say that even if I stopped smoking, that my PRMS could still stop me from breathing. He gave it that picture of one or the other, where the truth will probably be that they work together. That was part of the problem during the exacerbation, I kept getting extremely painful spasms. Lungs filled with water when crushed by muscles that don’t want to let go, don’t leave much room for what should be there, oxygen. Probably the only really good thing you can say about being that ill is that your brain doesn’t have the energy to really grasp the situation yours in. I didn’t once perceive any danger, other than landing up in the hospital. That was enough to be terrified of, more than enough for any one brain to deal with at one time.

It two months on now, yesterday was the kick that I needed to actually start think about it. I seem to need to have something that upsets my normal life for a whole day before they make it past my determination to ignore everything and just live. The thoughts started last night and were still there when I woke this morning. What is happening to my lungs is a complex mix and I am going to have to treat it as such going forwards. Clearly shallow breathing keeps the pain down, but I doubt it actually does the congestion in my lungs any good what so ever. Just as my immobility and spending 13 hours a day flat on my back isn’t doing them much of a favour either. I already know that I hardly cough, I never really have. But the danger of infection has to be raised by all of that and infection is the last thing I need. It’s taken me a while to realise the impact, but the only thing I have any control of is my breathing. I can reduce the amount of time I spend shallow breathing, I might just be better off taking a bit more pain and a few more painkillers for my overall health.

This morning, the pain is still there and not only did I have a headache when I woke, but I’m tired. Not fatigued, I’m tired, which means my sleep wasn’t right. Overall, I don’t feel great, but there’s nothing I can do about it. As I said something has aggravated my system. I have a growing feeling that I am at the start of some kind of flare. I could be wrong and I really hope that I am. All I know is something is wrong, something is pulling me down. Life doesn’t feel right in so many tiny ways, none big enough to pinpoint outside of my lungs, but combined are enough for me to fear that this is the start of something.

Please read my blog from 2 years ago – 17/08/2013 – Thanking the past 

I can’t find the reason for it but for the last couple of days I have been somewhat emotional. Silly things happen or come into my mind and there are these tears fighting to escape from my eyes…….

Tied into hell

Things aren’t good. I thought I felt it on Saturday, just that edge that I was slipping into somewhere I didn’t want to go. I spent the morning with the fire on, I was so cold, it didn’t matter which room it was, I was cold. But on Saturday, that passed yesterday it didn’t. It was on both thought that same cold, the one that has eaten inside you, but can flip in a second to you feeling the sweat building and needing to escape it. On neither day could I put my finger on anything, I just didn’t feel right on Saturday and by Sunday, I truly felt as though my energy and my spark for life had been stolen. Somehow there was nothing there apart from a desperate desire to sleep and to escape the ever increasing pain. I have a nap every day nearly always setting the alarm for two hours but sleeping only one. On both days, the alarm woke me and I came out of a sleep that I didn’t really want to leave. When I got up yesterday, the number of things that felt wrong were growing. Pain levels were rising and the desire to not do anything was so strong that I didn’t even manage to sit at my PC until my normal 6:30, by 5 pm I was desperate to escape it. I changed the TV program, closed everything down here and moved to the settee and started almost straight away to yawn. Nothing felt right. nothing felt normal and I still couldn’t put my finger on anything.

It had just gone 6:30 when I started to feel my mind slipping. I have been there several times before and it’s a really hard place to explain. It’s almost as though I am fighting to stay in the here and now as my mind is telling me I don’t really belong here, I belong anywhere else in time it chooses but not here. Not being mad, I know this is wrong and I know it is some kind of hallucination, one that when I am awake I can fight, but at times in the past it has scared the hell out of me. I have tried desperately to understand it and it wasn’t until I had my COPD exacerbation that I worked it out. When I was at my worst I know without a doubt that the levels of oxygen getting to my brain was too low. I frequently found that I was making no sense, to the point if you go back to the posts I wrote at the time, that I defy anyone in making sense of all of them, as I can’t even do that. I also found myself living in a half world of being everywhere else other than here and each was as real as the next. Last night I was on the edge of one, looking in, feeling the pull and pushing it away but talking, changing position or anything that meant I was in control. My breathing wasn’t great. My diaphragm and three sets of intercostal ribs were in spasm and weren’t letting go. The intercostals were so tight that my normal position of hunching forward where it is easier to breath was more than painful. There was no relief, no comfortable position and I had taken my permitted Morphine booster with little relief, if any. You would have to have been blind not to see the pain I was in and knew that Adam wasn’t just concerned but felt useless. He offered over and over again to do whatever I wanted him to, to help, but there was nothing he could do, no even anything I could do. At one point, I was so cold, so terribly cold, that I had to ask him to put the fire on for a while. It’s Summer here, but it felt like the middle of winter.

Bedtime should have been the end of it, I should have vanished into sleep and woken this morning, but I woke at midnight. I was sweating and terrified, I couldn’t work out what was scaring me so much, but whatever it was, I had escaped it. As I moved the covers off me so that I could get up, I instantly felt my skin turn to fire as the cold air touched it, just as it did when I took my dressing gown off before I went to bed. It’s a sensation that I know all too well. Not only is it on fire, but it feels almost like someone is slicing it off me in strips using a blade made of ice. I quickly dressed and headed to the kitchen, after taking a small detour to the loo. I was desperate for a cigarette. I haven’t felt such a demanding need for nicotine for a while, it’s something miles above just wanting a cigarette, it’s the kind of craving where you feel you could kill anyone who tries to get in your way. Not that I would, but you know what I mean. By the time I was sitting drawing in my much-needed calmer, I knew exactly what I had seen or imagined and had scared me so much. I saw it again as I put on my dressing gown but dismissed it. Sitting quietly in the kitchen I had no doubt that I had just failed to save the life of someone who had slipped from my hands into the middle of a frozen sea. Every time I closed my eyes they were vividly alive and there just in front of me, screaming for my help, then gone under the waves. It was all still there in front of me when I checked the alarm and saw that it was 3 am. My whole night was destroyed by it, right through to 8 am when I woke reaching out into the room trying once more to pull them somehow back on board but failing. I got up.

I know that all of it could be just one of those things, or it could be a the peak in my Morphine causing vivid dreams, but dreams aren’t there when your eyes are wide open, as they were when I woke and I could still see them as I did over and over last night. I could smell the ocean, the diesel and a sweet acetone smell that seemed stuck in the back of my throat. Nor was I dreaming when I got out of bed, with the fear and sensation that I was stepping off the edge of the ship, whilst telling myself that reality was when I touched the floor, just as I did. Dream or hallucination, I don’t think I am qualified to say, but either way, I hate them. When something feels and looks that real, it’s the last place you want to be. It may have nothing to do with the way I feel, or my spikes in temperature, but they feel connected as they appeared together, along with feeling generally unwell. Something is wrong, again. If I had never been here before, I would like the first two times it happened be completely terrified for my sanity. I’m not, well at least not yet. There is a clear connection between these real waking dreams to not feeling well. Not once have they appeared without it. They also always are linked to raised levels of pain in my chest, be it front or back, just my intercostal and diaphragm, or floods of water that I choke on, or congested so badly I wheeze. I am not cold right now, but I don’t feel well, but on the good side, I am quite firmly in the here and now.

Every time this has happened I have been left with one thing I just can’t answer. Do I tell my doctor or not? No one wants to appear stupid or to want to be diagnosed with some sort of mental health issue. How do you say to your doctor, “I’m calling because I have once more been living in World War Two or I just spent the day in a Medieval castle?” Maybe it’s not so much my saying it as what he might say in response, that I fear, or maybe I fear them both. Logic tells me that this and COPD could be connected. I don’t have the proof, but it makes sense that lack of oxygen could easily be the source of what I saw and felt. Why can’t my brain choose something more relaxing, like lying in the sun by a stream on a summers day? Rather than being abused by a barrage of chefs in hot sweaty castle kitchen or worse still being hunted by U-boats at night. It was just one more night and part of a day, spent fighting between reality and what, I just don’t know.

My lungs are already locking up and I still don’t feel right, but at last in the past two hours my mind has been mine. Every minute of distance between there and now, makes me question if I should even have written this. Is it real enough to be noted, or should I just have put it down as an aberration. When I started writing this blog, I made a decision that no matter what it was that happened it had to written. No matter how disgusting or painful, the words had to be here in case someone out there is searching to see if they are not alone. Well, I have always stuck to it, what you make of it is up to you.

Please read my post from 2 years ago – 03/08/2013 – Assessing the milestone

TARA!!!! I have made! At last the magical sum of £60 which means at last Google will be paying my earnings from the Ad on my blogs into my bank account! This is the final proof that Advertising doesn’t pay

And now the good news

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

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

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

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

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

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

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

It should be simple

I suspect we all have a narrative to our lives, either that or I am totally insane as I know there is this voice in my head always working away telling me what I need to do, how to do it and when, it chatters away just the same way as it chatters to you right here. Every night when I am waiting to fall asleep I lie there on my back feeling my body vanishing bit by bit into sleep, something I don’t actually remember being aware of so acutely of until recent years. I can literally feel muscles and limbs vanishing out of pain, into silence and on into sleep, which at times is really strange as I find myself with no arms or legs but with very awake and painful feet and hands. Almost every night I find myself writing the greatest posts knowing that by morning I will have forgotten them entirely and wishing someone would invent a recording machine that I could link directly into my brain, then each morning I would just type it up, but no such luck.

I wasn’t aware last night of being any more tired than normal but as I stood up to head off to bed I started to yawn, not those nice little ones, but those where you believe that you jaw will split as you just can’t open your mouth any further, although something inside is demanded it does. When I remember I always try to rise slowly from the settee, concentrating mainly on not letting my knees lock, if I forget I land up with every leg muscle cramping and unable to move for a short time. The shock passes right through me, turning in to almost a shiver as it reached my spine, I was so set on not letting that happen that the yawn totally took me by surprise, the second was almost as bad. As I walked into the kitchen to put my glass by the sink, I took my third huge yawn and felt not just my jaw, but my ribs, stretching too there limits regardless of the demands of whatever triggering them. That yawn though was the one that got me, the strain on my lungs actually started to cause me pain, I could feel the 4inch band through my body which was already tight, fight back by turning solid. I really didn’t expect that, but I don’t remember when I did last yawn like, try as I might there is no memory what so ever, almost as thought I haven’t yawned deeply for years. I took control of my breathing making sure it was slower and steady, which worked well in cutting the pain and by the time I was leaving the bathroom I was beginning to feel I was once more in control. Adam had appeared in his normal hovering spot in the hall, waiting to escort me to bed, most nights he will come with me thought to the bedroom and wait around almost as though he is ready to catch me as I take of my clothes off and sit on the side of the bed. It is probably more me than him, but some nights I honestly believe that I feel him relax once he knows I am sitting with no where left to fall.

Last night as I swung my legs up onto the mattress and slipped my toes under the duvet that Adam was holding ready to cover me, rather than my battling with it myself, I made a really stupid mistake. As I was putting my feet under the duvet I locked my knees which locked up all my muscles in my legs, it was hard not to make a squeal of recognition to what had happened, but I stayed quiet as I know he would have then wanted to try and help, when all the help I needed was to stay still. By the time he had tucked my under the covers and kissed me goodnight I was actually in rather a mess, baring in mind all this took less than 10 minute. What should have been a gentle wonder around before just lying down and sleeping, had turning in to anything but, my lungs as soon as they spotted the horizontal position started to go solid again and my legs didn’t want to let go and just sleep. All I could do was to try my best to relax and to distract myself away from everything that had happened, not yawn again and just to settle myself in to sleep.

I have to sleep on my back these days as it is the only position that will allow me to fall asleep, if I try to lie on my sides instead of the pain vanishing it actually increases, the last time I actually managed it I woke early in so much pain up the side I had slept on that I swore I would never do it again. At first it was my lungs that made me lie on my back, I guess that that was about a year ago now, in the past I fell asleep on my side but rolled over to my back once asleep, now I lie there as motionless as possible and sleep pulls me away quite quickly. I lay last night with my head filled with version one of my post, then version two and yes even version three, I couldn’t sleep thanks to the damage or what ever happened to my lungs just by yawning, if I could I would now note that down as a don’t do thing, but I don’t think you have a choice. Yes I did eventually fall asleep, it actually didn’t really take that long and before you ask why didn’t I take one of my knew get rid of pain pills, well I don’t want to take them for silly things like this. They are for the pain that happens with out a known catalyst, the pain that blinds and makes life unbearable, not the pain that I already knew would settle, it was just a matter of working my way through it.

I guessed long ago that life wasn’t meant to be easy, but I didn’t realise that instead of things getting easier as most things that you learn, they actually get more difficult. Going to bed should be one of the easiest things you do each day, you know, you just walk into the room, fall on the mattress, grab the duvet and that’s that. It took until a couple of years ago for me to realise that I had the whole thing upside down, everything gets harder no matter what you know or don’t know.