The terrible pain episodes of this weekend were depressingly instructive.
The way the pain went bad after the shrink appointment, then crazy on Saturday night, and tried to last night but I headed it off by lying down before it got started, all proved that having the facility to top-up the pain relief is crucial. I know the top-ups didn't work on Saturday, but they did on Thursday, and in the end they did yesterday, though it took two doses (a total of 30mg).
Without those top-up pills, each of those pain episodes could have been as bad as Saturday. I'm strong, I think I've proved that with the way I've made it through four years of this hell. But I'm not that strong. I couldn't tolerate repeated episodes like Saturday.
The whole idea of reducing (and coming off) the morphine, was to see if there was any situation that was better, before I decided to finish it all. The key thing was to find a way to be able to go back to work. Being forced to cope without top-ups would be worse. Not only would work be even less feasible, I'd be even more likely to kill myself.
This answers a number of questions. It means that zero morphine is unfeasible. It also means that trying the Tapentadol is contingent on being able to supplement it with morphine. I've asked the GP to find out for me if that's possible (in an email at 3am on Sunday, since the pain was keeping me awake!). Right now, I'm hoping he says no, because then I can just discount that possibility, and move on. I'm expecting the answer to be no anyway, since I did ask the pain consultant, and he said no top-ups, But he also talked about augmenting it with Oxynorm till you get down to the lower level of opiate in the Tapentadol. If you can do it for a few days, maybe you can for longer. We'll see.
The other big thing is that, at the moment, I'm taking slow release morphine every four hours. Although it's supposed to be a 12-hourly dose , I find it wears off much sooner than that. But I couldn't do that on the Tapentadol, because it's a strict twice-a-day thing. I started the four-hourly approach to manage the breakthrough pain without topping-up; a twice daily dose would just lead to more breakthroughs. Even if a bit of topping-up was allowed, based on my past experience, it wouldn't be enough.
So, I need regular drip feeds of pain relief, to keep a constant level in my blood. The pain will still break through, but generally only up to a point - the point that I've been mostly managing to tolerate using mental techniques over the past week (though still only when doing virtually nothing). When it breaks through badly, I need the opportunity to top-up. But if that doesn't work, there's limited point in taking more, because a) it'll only make me sick, b) the pain will still break through to the 'normal' amount and c) it raises my body's expectation for morphine next time, and hence lessens its potential efficacy (because it's all going to make my body feel OK, not to ease the pain). Working would undoubtedly lead to more and more top-ups (as it did last time I was in this position, a year ago), simply because I'd be moving around more, sitting in different chairs, leaning, twisting and so on.
So. It seems to me that the net result of all that is that I need to keep taking the morphine - stopping it isn't an option. But reducing it was a good idea. I've got it to 70mg/day, with a top-up budget of 30mg. I think I can reduce the daily dose to 50mg (five doses of 10mg/ day, instead of the current three of 10 and two of 20). The top-up budget will remain 30mg, but in cases of emergency (eg, Saturday, but not Thursday or last night [because I'd headed it off]) that can go to 50. So I'd still be taking a maximum of 100 in any one day, but usually between 50 and 80.
That's half what I was taking on those really bad days the other week, and on non-top-up days it would be a third of what I was regularly taking before that. That would be really good on all counts. It would keep the GP happy because the levels wereb't rising; it would keep me within what the Pain Clinic has me on record as taking; it would be easier on my body in terms of side effects; it would give me the mental boost of feeling I was fighting back by doing some of the pain management mentally.
I think it's do-able, and the other thing to consider here, is that dealing with painful psychological issues always increases pain, if only because of the tension in your body and the effects of crying. If I'm going to be dealing with more of the fallout from my abusive past, I can expect the pain to be bad. So I need to know I have access to sufficient relief.