Morphine control

If anyone out there is thinking about changing from Oxycontin to MST, don’t do it! Sorry but I am not myself today, I’m not sure who I am but it’s not me. Last night I went for the lower dose of 50 but the pain was too much to cope with so back to the 60 after 2 hours and 60 was the dose first thing this morning. It may sound a little nuts to you if you are not living your life on Morphine, but I am really not wanting to take one gram more than I need, as it really isn’t any way to live. This doped, not quite there, mess that is in my head makes me want as I did last night, to just go to my bed and cry, I don’t know were or why the tears want to be there, but they are so close to the surface that even my normally poor control has vanished. I suppose that’s all it is, just a case of heightening that inability to my control levels.

Morphine is a great controller of pain and there is no doubt about that, but there is a price to pay and it is not something to be swallowed without knowing and understanding the price. I know I am well addicted to it, if magically a cure appeared and my MS was gone, I would be a Morphine addict and getting off it would be hell. Morphine has been part of my life now for about 6yrs, the dose slowly going up and slowly I get more and more hooked. I am never going to be free of popping pills that change everything about my life. As long as I can manage to live with the pain and the tablets are holding it at a level that means I can operate, i.e. sit or walk, I don’t want to take anymore than that. Yes I am sure I could get rid of the pain, take a higher dose I might be able to be pain free, a really nice thought, but that would be the price, thought, would I have any or would I have the ability to act on them. I have seen the victims of Morphine, that dead eyed body that accepts without any thought what is around them, nothing there, nothing that shows any real life, I want to live as a person not a zombie.
So I will put up with some pain as a pay off to having some life, I know that it is only the first 48hrs, so judging it is wrong, but it isn’t any fun and I don’t find it funny.

The nurse arrived as expected this morning and took my blood and spent a few mins to just go over everything with me, she made it clear that she doesn’t agree with the Doctor that I should stop all the bowel meds, I have to say I am not convinced either. I simply haven’t had any control and the leaking is worse as there isn’t any proper clearing. We discussed different options but I am going to see how everything goes through the weekend then make the decision on my MST levels and how I am coping with all the changes. I found out that my Doctor is off for his summer holidays for three weeks so I really have to have to sort everything in the next 10 days, if I don’t have it right I will have to deal with the other Dr at the practice, or a locum, having to go over all of the story from the beginning, I really can do with out that.

My condition? Waiting AGAIN!

This is beginning to feel like a daily medical update. There is hopefully some good news following the Doctors visit yesterday but to me at this very second the best news is, I have no medical people in my home today!!! It just feels so good to be in a settled atmosphere, no tension of waiting around, feeling I can’t do anything as the doorbell might ring any moment, not that I really do anything, but even a shower is out until they had been and gone. Today just feels totally different.

I talked through all of what has been happening in the last few months and we are on all change footing at the moment. The Doctor confirmed what the nurse said the tablet fact having traveled right through intact to even the colour was clear Malabsorption, he agreed that that would be a perfect reason to my not having any control over my pain control. I had half expected that it would mean a change to injections but no. I’m not a chemist but apparently there are several different combinations that morphine can be administered in tablets form. It is highly possible that it is the combination the Oxycontin is that my body isn’t dissolving fully, so I am now on MST instead, this sounds simple but surprise, surprise it isn’t. It is impossible to say how much of the morphine has actually been getting into my system so we are playing with dosage at the moment. The reason Doctors prescribe Oxycontin is the combination of chemicals allow a lower level of Morphine, to have the same effect as doubling to pure morphine. The straight swap would mean I should be taking 90mg of MST and that is a lot of morphine. So we agreed that I will start on 30mg and I have 10 mg tabs as well, I can therefore work with it to get the right dosage for me. As I said before I have no desire to be flat out in my bed, but I don’t want too much pain either. This morning I took my first 30mg, one hour later I was in agony, there was not change to the pain level from before I took it. I dived in and I took another 30mg. That was 2 hour ago, I feel a bit doped but the pain is well under control, I think I could easily manage on 50mg, so I will try that tonight, I know the doctor wanted me to try the other way, going slowly upwards not high and coming down.

He as stopped all the bowel medications we have been trying to use to control them, he feel that all we may well be doing is aggravating the situation, but he isn’t sure what the problem is so I am going to have to go and see a Gastro Specialist at the hospital. A day out including people to get me there and back. The only thing that he said was, because of the pain I get, it may involve my Gall Bladder,but that could all be wrong, I need it all investigated. If it gets me body a little bit more controlled I will be happy. So I now wait for the letter to go to the hospital and everything else organised round it.

As for my leg, it is nothing more than what it always had been before, just fluid collecting due to my immobility, edema, more meds, doubling the dose of the fluid tabs to see if that shifts it, it might also help a little with the rest of my weight as well, fluid doesn’t only collect in your legs.

Tomorrow the District Nurse will be here again but luckily not with suppositories, they are going to do a full spectrum of blood tests, that will hopeful rule out some of the possibilities that could be behind my bowel problems, like my liver and kidneys. Then, well then I wait, wait for results, wait for appointments and wait for the right level of all my meds. I kind of feel that I have wasted the last few months and I am right back at the beginning. I also can’t help wondering what would have happened if we had continued on the path we were on, if I hadn’t found that tablet, what would have been the outcome?

The medication quandary

Medication is almost as difficult at times to handle as they illness is so I agree totally with the title to the above picture. Although I constantly say you have to listen to your body I do when it comes to medication find myself waiting, just as it took me several weeks of increased pain to call my GP yesterday and discuss again the options. The only med open to me now that can be increased is the Oxycontin, I have been on it for several years now and I am taking 30mg twice a day. I like many started a 10mg and it has increased as time has passed and for me I have had no side effects and no problems of any kind that I am aware of, so increasing the dose on the surface should seem like an easy decision to take, but it as most things, just not that simple. Like all opiates your body becomes tolerant to the drug and the dose has to keep going up and up, I had to think long and hard about going on to it in the first place as I knew the first step meant I we boarding a train with no brakes.

What is happening at this very second is what I worried about before starting, the level of pain in my legs now, is not far off as bad as it was before the first dose of Oxycontin, I know my future will always be stepping up the level as required but I don’t want to do this too quickly as I like being awake and with it. My GP wanted to put me straight up to 60mg but I asked him to let me try a smaller increase first, we agreed on just going to 45mg first. The conversation went back and forth and I got the impression he didn’t think it was worth trying the smaller step and that I would be back in weeks, he may be right but I want to try and that is what is now happening. I can see his point, when I said yes years ago, I knew then the path ahead so why keep fighting it, just take them and enjoy the drop in pain. I was brought up in a world were the family GP was god, you did as he said, after all he is the all knowing being of medical knowledge, so to me just suggesting a different route of treatment is still an alien concept.

Stopping opiates is horrendous, but he once again tried to reassure me that it was something that I wouldn’t need to worry about, as there was little chance of my needing to stop them. I know he is right but it isn’t that, that worries me, it really is increasing the dose quicker and higher than is needed. I suppose I always have in the back of my mind the picture of the zonked out junky, somewhere I don’t want to go. Right now I am waiting for the prescription to arrive through the post, I can’t simply snap a table I have and take the bits as they are slow release, breaking them would result in instant release. Fingers crossed I will have them for Thursday night or Friday at the latest, then I will be able to feel the result myself.

Listen for a while to any Twitter conversation on MS and you will eventually hear the discussion of what meds are being taken by who and what the effects are. I am unconvinced of the value of these conversations, my personal experience of suggesting a new medication or a different one from those prescribed, has constantly been that will not help you, it isn’t suitable for your MS, but as I belong in the tiny 5% sector of MS sufferers with Progressive Relapsing MS, that may be why. Although I know longer see GP’s as gods, I do still have a big enough respect for them to accept within reason their knowledge. You or I can read as many leaflets, web pages and have as many conversations as we like, eventually it is the Doctor who still has the power to make those decisions. I’m proud at the minute I had the guts to get what I wanted, it’s a big step confronting a demi-god.