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…….

"Are you alright?"

The first day of June and I have just turned on the fire yet again. I honestly don’t know what is going on this year, it is as though everything stopped back in January and hasn’t improved since then and I’m not just talking about the weather. It’s just been one long odd year so far. I suppose when you are caught up in something that is happening to you and you can find no relief, well it distorts everything else. I have tried so hard not to let myself ever be isolated inside myself throughout my illness, but somehow I feel as though I am suddenly failing to do so effectively. I have realised that Adam is even noticing the change in me. I have lost count the number of times he has asked me recently “Are you alright?”. It’s not so much his words but the true look of concern and confusion as though he is trying straight away to see past whatever the words are that might come from my mouth.

When you live your life locked in pain it is easy to stay there and to not reach out and be part of the world around you. I have made a point of not letting our conversation be stifled by it, to keep in contact in the same way that as I always have, with a mix of small talk and deeper subjects when needed. Lately though I know that I am failing when it comes to small talk, replacing it with silence. As they say it not what is said but what that is held in the science that matters. In my case all too often it is nothing more than pain and the deadening effect it has had over my life. The rest is a side effect of the same, as when you are locked inside you stop paying attention to what might be said later in the day. The TV and internet that have managed to keep me so involved with the world aren’t managing to make their way into my brain as they usually do. We are both used to my having an array of things to talk about and being able to pick up in Adams words clues that pull our chatter in other directions constantly. Locked inside myself, I now all too often don’t hear the subject of his words, far less the opportunity to deviate on the subject.

I used to be so good at putting my health into a compartment where no, I couldn’t ignore it, but I could control its impact on everything else. Somewhere along the passing of this year, it has escaped and the pain and discomfort have taken control of everything else. It is as though I am in some parallel universe within our home, sat here but not here at all. I know I am often just sat staring into space, facing the TV or my computer screen, but totally unaware of their existence. “Are you alright?”, will suddenly cut through it and I am grabbed back into reality to find that once again I had vanished. I can see the concern in his eyes, as he already knows the answer to his question. He knows perfectly well that I am somewhere else, he also know from my body language that pain has hold of me, but he’s not used to seeing it. My skill of covering up the annoying and the draining is now quite extensive, with so many years of practise if I couldn’t cover it all, well I would consider myself as pathetic. You can’t live your life showing those around you just how things really are, not if you want any form of a life you might call normal. I thought that it was a skill I no longer had to even practise, it was polished and perfected. Yet here I am slowly failing again and again to cover anything over.

I know I don’t have to hide it, but I don’t want anyone constantly worrying about me more than they already do. Adam has to be able to leave the house not fearing every second that he can’t physically see me, is a second where he could somehow be helping me. Not that anyone can help when your body is destroying you, if anyone could, believe me, I would have taken it long ago. “Are you alright?”, each time I hear it I instantly know that once again I have failed, that once more he isn’t seeing me, he is seeing my pain. That’s what I didn’t want, that’s why I hide the truth as I am a person, not a person in pain. Just seeing his pain and concern over what is there in front of him, causes me more pain, because it’s my pain, not his and my role is to protect him from it and I’m failing.

This year things have changed so much and changed so rapidly that I haven’t been able to keep up with it. When I was writing yesterday about flares vs. progression, this was what I was really writing about. Flares are sudden, they cause trauma to all concerned but their quickly over and life is rebuilt and goes on. Progression is slow, insidious and uncontrollable, you can’t rebuild as it doesn’t give you those points where renewal can happen. As fast as you might find a chink where you can get a finger hold and start the process it has changed again and you are once more floundering, lost and hearing “Are you alright?”. No, I’m not but I don’t want it to be seen all the time. I want it back in that container just off to one side where life goes on and it quietly grew without daily or hourly impact. This year has found me living further and further under a millstone. One that once it has reduced me to powder doesn’t even allow rejuvenation, it just starts to grind again. There aren’t enough hours in a day to sleep or enough minutes in those hours to rest. Everything just keeps growing and as it does so, it is swallowing up the “me” that I was holding onto so tightly.

This is the start of month six, my sixth month without a single complete waking hour where I haven’t been in pain. I don’t suppose it is a surprise to anyone other than me that I can’t cover it up. That I can’t show a bright and breezy face to life and smile my way through every minute. I am so tired, so past the point of making light conversation and ignoring the truth. I just want a week off, a holiday where I can renew and refresh, time to recharge my smile and time to find those chinks that I can hold onto. You see, I know they are there, they have to be, life always has them. Unfortunately, you can’t take a holiday from your health. I know I am just feeling worn down, it happens to us all and I suspect that I did set myself up for this one as I believed so totally in what the consultant was saying, yet nothing has changed at all. I know I have to give it more time and I can hear all that goes with those words. I just don’t want to be sitting here at the start of July and having to say this is the start of my seventh month.

Read my blog from 2 years ago today – 1/06/13 – Just too much

I realised last night that my toenails were really needing cutting and I asked Adam if he could cut them for me at some point over the weekend, he offered to sort them right then. It was at that moment that I said something I know I say to him again and again, but it’s a statement that along with the reality of the process, conveys just how exhausting life with illness really is, all I said was “I’m too tired”. If you think about it…..

The point of understanding

Yesterday was hellish, not all of it, well not until just about 11am. I had woken feeling as fine as I ever do, I wasn’t in anymore pain than normal, nor did I feel ill, everything was just average. So the day started as any other day and I worked my way through all the things I normally do, then it just not long after I had chased Adam out of bed the pain began, my stomach was in pain not just in the normal places but as many places as it could find to possible make ache. There are a million miles of the difference between the pain I normally live within my guts and the typical what I would call a stomach ache and that was what I had a good old fashioned stomach ache. It kind of shocked me as I actually can’t remember when I last felt anything like it, but there it was and I recognised it like some distant cousin to my recent life, I knew it, but I hadn’t met it for years. Every time I moved around or twisted, it shouted back it’s presence and over the first hour, it woke up the nastier side of spasms and intense pain and refused to shut up regardless what I did. It was the combination of the two that made yesterday a place I wasn’t happy to be at all. Oddly it also answered a question I was asking yesterday, as the pain rose, my interest in doing anything slowly but surely disappeared, all I wanted was to just do nothing. Not only did my desire to be creative vanish, but my desire to do anything at all, disappeared along with it, leaving behind it the numbness I normally feel towards anything outside my routine. I know I wanted an answer to how I had changed so much so quickly, but to be honest I would rather have been left wondering.

The last few days I was on a high, no need to guess why that was, my pain levels were average or slightly below and life had a zing to it that has been missing for a long time. I can only assume that all those good happy chemicals that good news pumps around your body ran out at around 11am yesterday. The stomach ache, that I still have this morning, I am reasonably sure is down to the Psyllium starting to work on me and actually producing what I would call a more normal reaction in my guts than I have felt in a long time, although nothing has actually happened yet, but I’m taking that ache as a good sign. The bad side is, of course, that pain has a horrid habit of breeding pain and the spasms that cause them. Within just a couple of hours yesterday, I went from feeling really good to wanting to crawl into my bed and disappear into sleep, which is exactly what I did.

The last five months of living in pain all the time and never getting down to a level where I could ignore it, has left me with such a dulled view of life that I had forgotten what it was like to be on a high. I had forgotten how things used to be, a mix of good and bad, what I was calling a good day, was worse than I feel right now, yet after that window of good, today feels terrible, but I still know it isn’t. I knew that I had made a million adjustments in the past 14 years, but it appears that just as you forget how childbirth feels, you also forget how it feels to just be alive and as normal as everyone else out there living their lives today. It is almost like you are walking upstairs against an elevator that is going downwards, at times you can feel as though you are holding yourself steady on the same step level, but the reality is you are dropping down just that tiny little bit each day. You don’t feel the downwards slip, so every day feels like the one before, only an outsider observer could actually see you gradual slipping below where you started, but you feel nothing different at all. I suppose if we did we would all start to panic, start to fear what was happening to us, it so subtle that unless something brings our attention to it, like an incredibly vivid memory or a reminder from somebody else, we just keep climbing at what we see as a totally steady state. In the last five months, I didn’t need that outsider, I could feel myself being completely unable to remain on that same step level, I was slipping lower and lower on the stairs and feeling every single dip and yes I was beginning to panic.

When I crashed yesterday, it reminded me of how I used to be when I was still working, one minute fine, the next screaming inside to go home and leave it all behind. When you don’t do anything, don’t have those things that test us all in normal daily life, you loose those wildly dramatic crashes, yes I do still get suddenly tired, but not in the way I used to, it used to be like someone flicking a switch, one second fine, the next flat and out. I came home from the hospital mentally skipping, not physically, that might have been asking too much, but mentally I was on a high. Even my tired body couldn’t fight against it, my mind wasn’t going to let anything else win. It’s amazing just how your mind can override everything else, physically I was tired, physically I had to sleep for three hours that afternoon, but my mind stopped the fatigue from hitting in it’s normal way following an outing, that override has ended. Today, I am tired, I am in pain and on top of that I have a stomach ache, but I am no longer scared, that one small high is still there as if nothing else totally useful came out of Tuesday, I left my fear behind me. A week ago if I had had this much pain and with this stomach ache on top, well I would have been waiting for the point I needed to call an ambulance, today, I am just working my way through it as I used to do before the whole thing went mad. That is another thing that is on those steps with us, not just our general health and physical abilities, but our ability to manage pain. Oddly though it seems to work in a totally different way, as your ability to manage pain grows at an equal rate to the one you are going downwards. A year ago I would have been waiting for my insides to explode if I had been in this much discomfort and pain, today I can not just handle it, I can also continue with my day.

I added in the peppermint oil yesterday, almost as soon as it arrived just after midday I took the first gel capsule. They are supposed to be able to pass deeper into your intestine before actually disintegrating, getting the oil into your intestine rather than your stomach. I was, therefore, a little surprised when I woke from my nap at 4pm to find that when I burped, I could taste the mint. I had my normal mug of soup about an hour later and was even more surprised to find at around 7pm I could still taste the mint, despite not having actually taken anymore. I didn’t take a second one as I wanted to see how long I could still taste it and be sure it wasn’t going to cause any new problems, but mainly it was simply out of interest. Somehow I don’t think I should have been tasting it 7 hours later, but mind you garlic can do something very similar. As of today, peppermint oil is now to be taken three times a day and is sitting in my pill stash in the living room, along with my booster pills and anti sickness pill, as I really don’t want to have to make an extra trip to the kitchen just to take them. I did try a Psyllium milkshake yesterday, but it didn’t work, coconut is not strong enough a flavour to cover it. I am going to try chocolate when I do my next shop, I think if I buy Coco powder and make up a base mix of strong Coco, which has to be mixed originally with warm milk to make it break down into a paste, once chilled in the fridge it might just do the trick. I have also come up with a few other ideas to test out and see what happens, the more I am coming up with the more sure I am that I really can bring it into my diet without a total disaster occurring.

Read my blog from 2 years ago today – 24/05/13 – Finally I admit it!

It constantly amazes me just how different we can feel in those minutes of lying in my bed heading toward sleep than throughout the day leading up to that time. So often, I find I lying there, sometimes in pain and at others just feeling unwell, not wishing for, but almost expecting that I will not wake the following day. It is a feeling……