I don’t think I have had a single hour free from the pain or at best discomfort from my diaphragm in the past month. At it’s best level it is just how it is right now and of course, this is probably the most difficult to describe or explain. It isn’t pain, but it makes little difference whether I am breathing or holding my breath, there is a constant sensation of something holding on to me, telling me every second of the day just where my lower ribs are. It is as though when I breath, it tightens and relaxes slightly again and every movement I make causes it to again grip on the side I am stretching. Each spell of gripping is edged by a sensation that I would expect you feel from pinking shears, a serrated edge, both the pain or the discomfort always follow the same pattern. As long as I am upright I can to some extent control it, but it always has the upper hand catching and pulling at me for no reason, just as though it want to remind me who is boss. It is almost as though it like to remind me who has the upper hand and is always able to bring my to a stop with just a small action. Breathing should be a subconscious action, it no longer is, no one thinks about their next breath, it is meant to be something that you never think about, something you just do and never notice, that is now extremely rare.
I guess that it is sods law, but of course with my need to sleep as much as I do, you have to lie down and lying has always made the whole thing far more difficult. Lying in my bed was actually what first brought my attention to the fact I had any problems at all with my lungs, when ever I lie down my lungs turning what I can only explain as, as solid and the longer I remain in the same position the worse it gets. For this reason I count myself as lucky that sleep takes me reasonably quickly, but in those few minutes no matter how few they are, it always feels like the lower half of my lungs are turning to concrete. I have tried to find out as much as I can about COPD but because mine is complicated by my having MS, my understand remains some what blurred if you like. I have no idea what I should be looking for or even if it is the 20% damage caused by my MS, causing a particular sensation, or problem, or if it is the emphysema that is responsible for the other 20%. The information I have found on line unlike what I found about MS is actually quite detailed and I suppose understandably is focused more on the final stages, I am mid way though the process, the stage that most with COPD patients are diagnosis, but nowhere did I find a site that described how things would feel and what those sensations where caused by. Although my specialist seemed to think nothing of any importance by the spider veins around my lower ribs, they are still getting worse and are now darker and there are more small areas of bruising appearing, even if they are nothing to worry about, it would be really nice to just know what is going on.
I know I am going through what is the normal process of learning about what is wrong and what it does. When you sit there in front of the doctor and they tell you what they think you will need to know, it is of course not until weeks later that you start to pull together the information that you really need. I thought that the adjustment to a secondary chronic and lethal conditions would be easier to accept and to get your head round, but they aren’t. Just because you are already ill, doesn’t mean being told again you are dying, is any easier than hearing it the first time. In a funny way it is harder and something I wasn’t ready to accept until now, yes I written about it, yes I have spoken about the steps we as a family need to take and the decisions I had made about not stopping smoking and so on, but that didn’t mean I had accepted it, it just meant I had processed it, a very different thing. I have always been one of those people who first deal with things on the logical level, long before I really let emotions come into the situation in any way. It is really easy for me to sit and make list, a plan of actions but to put myself into the middle of all of that and say this is happening to me, takes a lot more time.
I guess you never really learn how to deal with illness, as every illness has a different impact on your life. Illnesses share symptoms and outcomes, they also share an incredibly long list of impacts and changes you have to make to your life, but where they all split of into their own little bubble, is when it comes to you as a person, your fears, and your beliefs. I could sit down right now with another person who shares all of the conditions that I have and no matter how much we talked and we shared, both of us at the final point of talking, would still find that their are personal fear and worries that effects us and us alone. I also think that if tomorrow another illness was added on to my list, that I would still have to go through the entire process of understanding and accepting just what it meant to me, it doesn’t get any easier just because you have been their before. Strangely the only thing that I did find easy was the accepting there was nothing they could do to fix me, well I don’t remember when last a doctor said take this pill and you will be better. Each new condition now no longer comes as a surprise, on the surface I just add it into the collection and may even appear to shrug it off, almost as thought I don’t care. Inside it is very different, yes as I said I do go down the logic line first but that I suppose is my coping system, but don’t be fooled there is an internal impact even if I choose not to always show it.
Right now I am at the point where the questions are formed and I do actually need that return visit to come round as I am now ready to ask what is this, why is that and what will happen next? I have had 30yrs of living with MS, 12 with fibro and a list of others that fit in around those dates, but with just over 1 yr of COPD, I am very much still at the beginning.