Managing pain

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 >

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……

Drugs, right or wrong

During yesterday afternoon I received a tweet that at first made me laugh, not because it was intended as a joke, but because of my last two posts. Two days off writing about improving understanding of chronic illness with those who aren’t actually ill and the simple changes and support that could make life better for so many people, to then receive a tweet from an able bodied person telling me to stop “whining and move on”, especially as it was in reply to a tweet which read “If you can live with #CHRONICillness you can do ANYTHING – We’re not #disabled, but enabled”. I laughed at first as I found it ironic that a positive tweet could be seen as whining, I answered their tweet and told them that that tweet, was my reason for being on twitter and maybe they might understand if they read my blog, at that point they unfollowed me. I did actually half expect that reaction as she was showing totally something I had discovered myself before I was housebound, some people, not all, but some are simply intolerant of the disabled. Unfortunately no matter how anyone tries they are a sector of this planet’s population who educating would need far more thought and innervation than I believe I could supply ever. Unfortunately, I have never been known for being subtle, changing their opinions totally without them knowing it is happening, just isn’t my style, I can manage the positive spin, but disguising it as a sneaky something else, it outside my abilities.

Overnight the clocks were turned back, the official end of British summer time. In theory, that means an extra hour in bed, but theories don’t always pan out, after my normal 11 hours sleep, I woke up needing to go to the loo and awake. This, of course, means my day is now going to be an hour longer, that is if I can stay up until 9pm, but I fear that I will flack before that. Even last night, which is my favorite TV night of the week at the moment, “Strictly come dancing” and “Dr Who”, I was from about 7:30 onwards wanting to head to bed. If there is one thing that chronic illness doesn’t respect in any way, it is what makes us happy, I would actually go as far as to say that it goes out of its way to spoil anything it feels like fun. I had only been settled on the settee for about 10 minutes when my body decided that pain in my left side might just be needed. It was the type of pain that simply means that there is no position that you can sit in for more than a short while before it forces you to move again. I am more than used to pain in my arms and legs, they have been part of my life now for so long that I doubt even Adam knows when it is there at its normal levels, yes if I get a peak, but at normal levels no. The longer you live with pain, especially after years of being told that there is nothing wrong, or that I was just imagining it, you learn to cover it up and to act as normal as those around you. I managed my cover up act quite well until around 8 when he started to give me sideways glances and eventually turned to ask if I was OK, as always I said yes, even though his look told me he knew the truth.

Once I did make it to bed I had a real problem, I was feeling terrible, to the point when I stood up to head to the bedroom, I wasn’t totally sure that I was going to make the distance. I have never fully understood what it is that makes me feel like that, or how it is that pain and tiredness is translated by your body into making you feel ill. I am sure there is some medical explanation for it, but it happens and when it does, just like everyone else who feels ill, you want to give in and sleep, the pain in my side though had other ideas. Once I was laid down it started to spread and as always the pressure started to build in my chest, I lay there for about 10 minutes but knew that this was another night that I needed a morphine booster pills. I find it so maddening that you can be exhausted and past just ‘wanting’ to sleep, yet there I am having to take a pill, just so I could. Tablets are part of my life, as they are for too many of us, but despite years of taking them, I always kept questioning what they do and what I really need as nothing would please me more than to be able to reduce my handful’s by even just one table per round. I used to really play around with them, stopping the odd one here and there, it was only last night when I felt so annoyed at having to take one, that I realised I hadn’t been messing around with them for nearly two years. The more I thought about it both last night and this morning, I have worked out that the change happened when they eventually gave in and put me onto Oxycontin and then onto MST. I honestly haven’t missed, or purposely not taken one tablet since then, the only thing I can put that down to is the fact that at last, they have me on meds that work. I can only guess that the reason I kept switching them around, stopping a starting different ones, was quite simply because of what I kept telling the doctors, they weren’t doing what I needed, to have my pain under control, now that it is, normally, I am content to swallow whatever they give me.

I fully understand that doctors are cautious about dishing out high-level painkillers, but surely there should be a list of conditions where the facts are that pain is a significant factor and that people who have those conditions should be listened to more when they say the drugs they are on, are not working. Every time I saw my Neuro after my diagnosis I was telling him the same thing, I am in constant pain and the drugs are helping, but not holding it at a level I could live with. Every time he made a small tweak and sent me off for another year, yes I did say year. It is one thing living with pain at a background level, it is another living with it at a level where it stops you functioning with only annual opportunities to get it adjusted. I did try to get my GP to do something for me, but his answer was always the same, that he didn’t know enough about my condition and that it was down to my Neuro to prescribe the correct drugs at the correct level for me. All that suddenly changed when I was put onto Oxycontin, then suddenly he was happy to talk about what level I needed and what drugs were best for me, he was the one who changed it to MST and without any hesitation increased it when I asked him to and even prescribed the booster pills for me. That change I am sure was brought about by the fact he was now dealing with drugs he knew about, but I am sure that right now there are others out there fighting to get some peace from the pain and just like I was getting nowhere. It is a system that like so many other things is broken, we are the people who know best how our bodies are reacting to the drugs they prescribe and I honestly felt for years that all the decision were out of my hands and how I felt, didn’t really matter.


Please read my blog from 2 years ago today – 26/10/12 – Assessment 

Sometimes in life, it is good to sit and just reassess where you are going and what you have done so far. All too often it is one of those things we don’t do, it is all too easy to not really think about life but just keep going, with the odd grumble but no action. I know that I never planned for the distant future, in fact, I didn’t plan past the next payday, as that was how I measured everything. Was there……