I am still getting no peace from either my stomach or my diaphragm, it is beginning to feel as though there is nothing in this world that will make any of it better. The morphine helps when it is at it’s worst, but most of the time I just get on with it, doing what I can to find a position in which I can sit or lie that doesn’t make it worse. When you are in pain from your shoulders right down to your hips, both those activities are somewhat difficult to do comfortably. I have tried shifting my ribcage into every position known to me, stretching my spine until it feels as though it will snap and even arching my back so that I open up my lower ribs as far as they can, none of it works for more than a few seconds, if that. There are just too many areas of pain to be able to relieve more than one at a time. To be honest, it is the pain in at the front from my waist to my breastbone that is the worst, for the life of me I can’t work out what on earth is causing the pain under the edge of my left ribs. It is one of the pains that has been around now for about 2 years, it has constantly got worse and when at it’s worst, so sharp and so painful that I can do nothing but fill myself with morphine as there is no escaping it. When I am lying in bed, I have now for over three years been able to feel what I can only describe as a pulsing vein, I know I mentioned a couple of years ago, but it isn’t that or the pain that is causing the discomfort, that is from the feeling that there is something trying to push out from inside, yet when I press my fingers under my ribcage, there is absolutely nothing there that I can feel. I can make sense of the rather more intermittent pain on my right side, that I am guessing is coming from the gallstones they found two years ago that I didn’t even know existed until then. At it’s worst, when my diaphragm has locked solidly, they both hurt along with my kidneys and stomach and that is before I even mention what is happening in my intestine or the intercostal muscle spasms that it triggers, along with the fun of still continuing to breath.
Reading that all back it sounds truly horrific, or at least that would have been my impression if I had read it written by anyone other than myself. Pain and discomfort somehow change when they are inside yourself, especially once you have lived with it for many years. I know I have tried before to explain it, not just in here but to myself, it’s difficult to find words that make sense of how you can truly adapt to anything. These days I just get on with it, I do what I can when I can to ease it, oddly though I now understand what it is about chronic illness that makes it impossible to work once you have reached a certain stage. I know that when I first lost my job that I tried everything to find someone who would employ me even thought I couldn’t leave the house. I had spent years working despite the fact that I was too tired to always give it my best, but I always made up for it when things were better, but then I still felt capable. Even now, it isn’t the tiredness that holds me back in the things that I do, as long as I pace myself and work with it, well I manage. I am not under any illusion that I could work any longer, well not to the level that I would deserve to be well paid for it, but what would stop me more than anything, is the pain. It is such a distraction, it takes over your mind and no matter what you are doing it stops you. Pain eats into your brain in a way that you just don’t expect. It takes away every train of thought and leaves you somehow lost in a maze of blackness and when it eases, you don’t have the slightest idea what you were thinking about before it began. On bad days when you have just short periods of peace between it next demanding bout, well being able to work just wouldn’t be possible. I found having poor concentrations difficult enough when I was working, being interrupted by staff, emails, meetings and phone calls often left me having to work longer on the average day, just to make up for the fact that I kept forgetting what or how I was doing something, if I had had to deal with pain of the level that I do now, I would have managed nothing. Even completing this some days is a trial, but it is also one of the things that I find great pleasure in and more than compensates.
Chronic pain eats away at everything that you enjoy, it drains not just your energy, but also your very life. It has a level of fatigue attached to it that is actually nothing like the fatigue I knew just from my PRMS years ago, in fact, I would say that it has a fatigue all of its own. I don’t know how to separate them, but I feel there is a separation, subtle but there. With every year since my diagnosis, my pain levels have risen, slowly at first as though there were no real difference except in my head, but I know now that they were rising, we all too often don’t see things until we look back. In the last three years, I know, I don’t have to think about it at all, my pain levels have shot up and they are still rising almost weekly now. I have refused to ask for more help from my doctor than I already have, I manage on the levels of pain relief that I have and I take my booster pills when I can’t take anymore. I also know that I am not far away from changing that as I am reaching all too often for them, but I as alway fear raising it any higher. If I could believe that there is enough give in the system to ensure that I don’t have to live in pain in the future that I couldn’t bear, then maybe I would be more willing to ask right now, but I know from reading that I am already over the half way line when it comes to daily dosage and from the reaction of pharmacists that my boosters of 10 mg of Morphine is higher than most would be given straight off. You just have to watch TV medical shows to know that people who have survived major accidents seem to only get 5 mg, so I have no doubt that doctors prefer to give as little as possible on all occasions, even when it comes to palliative care. It doesn’t matter how used you get to pain it still holds a fear factor and I doubt that it is one you ever get over. The medications they can give for it all have their problems and nothing is ever the perfect answer, more a compromise between comfort and side effects, the worst for me is the fogging of my mind or should I say the further fogging of my mind.
To date it doesn’t matter what I have been prescribed, I am still always more than well aware of what is happening and oddly, most of the time I am pleased that I do. There will always be pain that breaks through no matter what they give me, I am resigned to that fact, but I just wish that those levels of pain didn’t have to be so determined to make themselves known. Knowing when to give in and when to fight on is going to be a constant battle, that is something that I now fully understand, it’s a tough lesson but we all eventually have to learn it. I have also learned that there are no golden rules and no nice neat graphs that tell you where you are on what scale and what the next step is, I wish there was, but there isn’t. Whatever the cause or whatever the reason for it, we all have to find our way through ourselves, decide when we need that bit more help plus of course, to talk to the doctors and work with them, it’s the only thing that I have found so far that does work.
Read my blog from 2 years ago today – 20/03/13 – Perception changes > http://bit.ly/XppH9y
There are times that you find yourself sitting in disbelief unable to take in what you are hearing. The person talking to you has been a friend for years, but they in just a few words have blown your perception of them right out of the water. A friend of mine is now amongst the millions of others……