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…….

The start of an idea

The shadow of the night before hung over much of yesterday, but I was determined to shake free of it and move forwards again. You can’t make yourself breath in a different way when either asleep or going to sleep, but you can when you’re awake. Well, some of the time. I tried to make a conscious effort to take more air in whenever I could, or whenever I felt I was slipping slightly. It’s one of those things that the I just can’t say if it worked or if it didn’t. You can’t measure what didn’t happen, without know if it would have if you didn’t intervene. What I do know is that the morning was harder than the afternoon, but in the morning I am busier and distraction is equal to sleep, you forget to do things. I did have total failures, spells where I was clearly on the edge just as I was the day before, caught in the feeling that here wasn’t where I was supposed to be. But just like yesterday they passed, did breathing deeper make a difference, who knows. Just taking more air into lungs sounds so simple, but when you have those tight bands around you, it’s a true struggle. We are all programmed into not causing ourselves pain, I don’t need to even try taking a deep breath, I know what it does, it hurts. Pushing against that isn’t easy, but I can take in more air than I would if I didn’t try. It appears that I have fallen into a pattern of underestimating the amount I can stretch those bands before they trigger true pain. The only problem is it takes concentration, any distraction, even the tiniest and I fall back into normality.

After my bad nights sleep, I fell into a deep sleep within seconds of lying down for my afternoon nap, just as I did when I went to bed last night. The bad part is both had something in common, I woke with a terrible headache. In fact, I still have the one from last night, something I have often had in the past month when I wake. If this was the first spell of nightmares/hallucinations, then I would be far more worried by this than I am, but it’s not. I have just four weeks until I see the consultant and unless something dramatically worse happens before then, I am sure that I can wait. My lungs do have a slight wheeze to them in the last few days and yes, I have been short of breath just moving around. Again, though, I have had many spells of that in the past few year, so it’s not exactly something to start sounding alarm bells over.

I still find it incredibly hard to know when, or when not, to start getting worried about the things that I live with, or even if there is any point in worrying about any of it. I always find myself caught in two minds about making a fuss about things. I know that I am far from the illest person out there, but I don’t know when compared to those in my peer group what is counted as a medical emergency. To me, a medical emergency is something that means you go to the hospital because they can do something about it. Like a heart attack, where they can get your heart going again, possibly do an operation to stop it happening again and you carry on with an improved quality of life and also an improved longevity compared to doing nothing. I don’t feel that I ever fall into those categories. When you are living with a series of conditions that interlink to make life hellish, all that no one can do anything about, where is that emergency point. A mild rise in one symptom isn’t an emergency if I hadn’t had that, let us call it a dream for now, if I hadn’t had that dream and those feelings. I wouldn’t have mentioned it at all. Shortness of breath and pain are everyday events. Feeling fuzzy, light-headed and waking with headaches are everyday events. There is no emergency. Even the fear that my brain isn’t getting enough oxygen all of the time isn’t an emergency, it’s a fear, one I have had for a while and I am still here and still myself.

The doctors can’t fix me, there is no operations, no medicine, and no treatment. Yes, if it’s proved to be a lack of oxygen, they can do something about that, but I doubt they want me in A&E when I have an appointment in a couple of weeks. There are so many isolated events and symptoms that I and others live with, that at the time feel like the end, but never are. Which ones are the real problems, the real emergencies? There is also one other factor that I am sure every single one of us who are caught in this progressive illness nightmare struggles with, is there really a point in running to the doctor every few minutes. The ticking clock in the background of my life isn’t ticking any slower. I know that this is going to sound wrong but is there a point in running back and forward trying to make it longer? I know that my prognosis isn’t pretty, I have always known that. When you get as far along the path as I have, the questions about the end of that path start to grow louder. I like most, have no desire for a long slow painful end. One where I would need to be nursed through every day, is something I don’t want. I always had this view of my life as being that person who worked right through to my last hours. Just like my grandfather did, he collapsed at work and died within a week. That to me is the way to go, not lying in bed for months maybe years. Sometimes the idea of totally losing my mind or a bout of pneumonia sounds like a gift.

As I said, I knew that would sound wrong and it does. I don’t want to die today or even tomorrow, I want to live, but the idea of a life that is out of my control holds none of the things that I see as living. It’s so wrong that the biggest thing ahead of me is totally our of my control. I know I still have a long time ahead of me in which to work this all out, but it’s something that plays on my mind. I don’t even know where to turn to get any of those answers I am looking for. I don’t even know what help and support is out there for when things get to the point where life is truly tough and truly heading off where I don’t want it to go. How do you plan the rest of your life when so much of it is already written and you can’t actually change that? What help and support is even out there to turn to? My experience so far is that there is really very little, and that was the experience of someone who was still reasonably fit and healthy. Housebound is a major barrier to getting help, as oddly all the help that I ever found set up for those who have a chronic illness, requires you to go to them. What when you can’t financially afford to get there? Or when you physically can’t manage to get to them? Well, so far that has come back with a brick wall. The answer, even from those who should know better, is if you can’t come to us, well we can’t help. Being a none driver and living like most on a budget, has meant that on many occasions long before I was housebound but was in a wheelchair, the little help that was out there, was out of my reach. Now being housebound means there is even less than there was before. It appears that care and support are more a question of what you can do for yourself, when it should be what we need from them.

So far I come up with only one thing that seems to be for sure, there is no right or wrong answer to any of it. You are the only person there is to pursue and seek out what little support there is and even then, you are mostly on your own. How do you find out the options on your care when your health is beyond what you can do for yourself? Who do you turn to when you need to start planning and preparing for what lies ahead of all of us? If you want to plan your will or even your funeral, you can do that with ease and no one bats and eyelid or thinks it’s strange. But if you want to start planning your death and your care for the months and years before, suddenly you are some kind of alien. I don’t want to leave it down to chance. I don’t want it to be that sudden horrid monster that appears and you are suddenly at the mercy of the system. I want to know what might happen in all the variables that lie ahead of me and just what they are. It might sound like a huge demand or even a morbid one to some, but I don’t really have a life to plan for. I have already done that. I just want to plan what comes after so that I am not faced with a nightmare that’s out of my control.

Please read my blog from 2 years ago – 04/08/2013 – 1 hour is changing my life 

Sometimes it take something going wrong, for you to realise that it has always been wrong, yesterday was a perfect example of that. The day started well, my new system to give me………

I’m ill

All last week Adam was grumpy and rather down, not surprising as he had a rotten cold. I was really dreading catching it, but the days ticked by and as they passed I slowly relaxed and came to the conclusion that I had been lucky and had escaped it. All day yesterday I was fighting with my lungs, there was no comparison between how they were when I woke and how they were when I was sat watching TV last night. The morning was almost normal, just a bit of pain that I kept putting down to the fact I didn’t seem to be able to keep my posture right. In fact, that was how I spent nearly all of the first half of the day, catching myself beginning to crumple and having to pull myself up from my core, over and over and over again. By lunch time I had developed the feeling that my chest had compression bandages around all of it but still the word “cold” didn’t enter my head. Nor did it when I started suddenly drinking gallons of liquid as though it was going out of fashion. By the evening, I couldn’t find any position in which I could sit without incredible pain in the back of my lungs when hunched forward and when sitting back, I simply couldn’t get enough air inside me. I didn’t feel anything that would suggest it, or that it wasn’t just my COPD and PRMS working together. I was totally delighted when bedtime came around, even when I found that the simple vibration caused when just taking a step was enough to have me dreaming about a booster pill. I knew I was a mess and I had had enough for the day.

I woke in the middle of the night, all that fluid that I had been wondering where it had gone, had suddenly decided it wanted to leave. As soon as I pulled myself up I knew I had a headache and clearly had that taste in the back of my throat that said phlegm. I now know it is coming from my lungs, the occasional cough is enough to prove that, but there isn’t any wheezing or anything like that. Once actually on my feet I could feel that ache all over me, on one hand not odd, but somehow different. By the time I woke this morning, all my glands were welcoming me by reminding me of their presence and position. It still doesn’t feel like a cold, but I don’t need any doctor to tell me that I am not well.

I have spent a lot of my life with different lung problems. Firstly, Asthma, which hasn’t bothered me that much since I became housebound. Just the occasional breathlessness when active, if you can call it active. As long as I keep myself warm, well fed and dry, I can keep my other friend bronchitis at bay. Put me in a cold or damp room for just one night and I won’t be able to breath the next day. It is another condition that is on my personal list of chronic conditions, as most winters brought at least one bought, often many more. I, like a lot of other people, found that just having the flu jab, for some reason to keep both bronchitis and colds at bay. Being housebound of course means I can’t attend the doctors to get the annual jab, it also means that I don’t come in contact with sick people as Adam is normally healthy. When I was told that I had COPD and that on top of that my PRMS was doing its damnedest to stop me breathing. I went through a short spell of paranoia about Adam bringing something home. Luckily, he gets the jab due to his work, so I have remained free of any extra lung problems for many years now, but I have always been waiting for it. Being ill on top of a chronic condition isn’t funny, one of the reasons why I fought so hard to stay fit while my body would let me, as when I got ill, I was really ill. When your immune system is busy destroying you, it isn’t that interested in fighting off some bug. Half the time it just ignored it and I have managed to land up in hospital three times with bronchitis that changed into pneumonia. Trust me that’s a condition no one wants to have.

No one ever wants to be sick, but when you are living with other lifelong conditions you actually begin to fear it. The idea of what having a bout of bronchitis on top of my COPD is something I had avoided thinking about too deeply. I do worry about the fact that I spend more than half my life flat on my back, is the perfect position for fluids to congregate in my lungs and to do damage. Like many other things, you never have the correct discussions with doctors when you have them to hand. I never even thought about asking what do I do if I get a cold or have bronchitis? Should I call and get help straight away, or do I wait to see what happens? They aren’t a question I would need to ask if my COPD was further developed than it is, I would have already called a doctor, but I no one can stop my PRMS from constricting my lungs. I really didn’t need an example that should have been in yesterday’s post, in fact, it’s rather ironic this should appear today. I have always said that there should be well-written guides for everyone when they are first diagnosed. Within that literature, I would insist there were flow charts, ones that take away all those doubts and questions as the would be clear if this happens, do that if that, well do this. I am totally convinced that a lot of people land up going through things that could have been avoided if they just had a guide to help them.

The plan for today is to have my shower this afternoon, the way I feel at this second, well I can’t see that happening. What I can see with total clarity, is as soon as I can, I will be going to bed.

Read my blog from 2 years ago today – 12/06/13 – NHS roulette

I so love the British weather, last week it was out to kill me and this, well it’s returned to perfect conditions again. I wish there was somewhere that never got warmer than here, or colder either, well apart from a few days of snow per year, I would be so happy to live there. It seems to be a large part of being human that we are never totally happy with……