Wednesday, 14 October 2009


I can't seem to make myself go to bed. I can't even seem to make myself feel tired. It's not exactly that I'm wide awake -- if I lay down and closed my eyes, I'd probably find that I was actually tired, it's just that for some reason, I can't do it. I can't seem to bring the day to a close.

It's not that I'm scared to go to sleep – not consciously anyway – and it's not as if the panic attacks or the nightmares were bad last night – actually, they were a bit better – but the thought of going to bed feels as fundamentally wrong as drinking poison, or throwing myself off a cliff.

It would be easy to blame it on my Dad, and it probably is to do with that, but I never really felt like this in the past. I had nights where I didn't want to go to sleep, but not like this, and I'm convinced it's to do with the medication. There's something about the morphine that seems to reach down and open the door to the deepest, darkest, most concentrated and intense emotions in your psyche. Then it reaches in and stirs them around till they come sweeping out like some kind of interstellar lab accident. It's why the hypnotherapy last year was so unbearable – I was digging around in my own subconscious at a time when it was being chemically dissolved from the inside.

At the moment, every few days all of the rage and sadness from when I was a little girl rises to the surface and the intensity of those feelings is mindblowing. They're so huge, so deep, so broad that I just can't find words for them. Whatever direction I look, they stretch beyond the horizon. Forward, back. Left, right. Up, down. They’re never-ending. And this reluctance to end the day is the same. It just feels like there's some kind of insurmountable ‘something’ standing between me and tomorrow.

I know it must be part of the cycle of side-effects – another one to add to the list of rage, depression, pseudofeelings, oversensitivity – but that knowledge doesn't make it any easier. I feel completely disconnected, divorced from myself. Washed away inside an enormity that I can't even begin to comprehend.

Sunday, 11 October 2009

I think I've decided to come off the morphine.

I wasn't planning to, not yet anyway. I was planning to do the increase to 80mg next weekend, then just leave it for a month to give the side-effects time to settle down. But it seems like the decision has crept up and made itself behind my back.

I've had three days this week where the side-effects went right down; I wasn't dizzy, I could breathe, I wasn't sick, there was no rage, depression, nightmares or panic attacks. It was bliss! The pain levels seemed to drop at the same time so it was a double whammy – less pain and virtually no side-effects. I could think clearly, I could write, I could even sleep. I was still needing my arm in a sling in the evenings because the neck pressure was coming straight from my shoulder and causing migraines, but I cope with that. As long as I kept my arm still and supported, it was OK, and it wasn't a problem in bed, so it wasn't keeping me awake as it so often does.

Then on Friday, the side-effects started up again. I'd had panic attacks all the previous night, I was dizzy and couldn't breathe for hours after taking my morning morphine. I could feel the rage building in the evening, and that night was one horrible nightmare after another. So I knew the side-effects were back.

Now, ever since the last increase, I've noticed that the shoulder pain has been worse (up until the last few days); worse but different. It's been much more crampy than what I usually get, and I know from my spreadsheets (they may seem anal, but this is where they’re worth their weight in gold!) that it's happened before. Every time I do an increase of the morphine, the shoulder pain gets worse. There’s also a tendency for the anti-tramadol pains and the neck pressure to get worse.

All of that had eased over these past few days, but then on Friday night, it was back. I lay awake for hours, tossing and turning with the most awful the neck pressure, so bad that I couldn't find a position that eased the headache. I ended up having to get up at usual work time on Saturday, even though it's the weekend, because I just couldn't lie there any more. It carried on being bad all day, and I also had much more anti-tramadol pain than in the previous few days.

As I was lying there yesterday morning, I started to think what a coincidence it was that just as the side-effects start to ramp up again, so does the neck pressure. After a day of fighting with it, and as I was desperately trying to find a position that eased both the neck pressure and the anti-tramadol pains in the evening, I realised that more and more it seems to me that these two things are ALSO side-effects. It makes sense -- if opiates cause muscle spasms (which is what the anti-tramadol pains are) in my back, why wouldn't they also cause them in my neck? And why wouldn't those spasms potentially pinch nerves, so leading to the neck pressure that causes the migraines? The change in the shoulder pain shows that the same thing is happening there too.

For some reason, I'd always thought of the anti-tramadol pain as being somehow separate and different to the ‘side-effects’ – like the opiates caused a physical reaction that led to the pain, rather than simply being a chemical reaction, which I guess is how I've always thought of 'side-effects'. I guess it's because I've always viewed the anti-tramadol pain as being a sign of my body needing more of the drug, rather than reacting to it, because initially I only experienced it when I’d missed a dose.

But it seems to me now that there's no real difference. The muscle spasms are a side effect of the opiates, just like the dizziness and the trouble breathing. All of the side-effects have undoubtedly been worse this increase than the previous ones. It makes sense to assume that the next (and final) increase will be even worse. So I'm not exactly keen on the idea of increasing to 80mg.

What terrifies me most about coming down off the morphine, though, is those muscle spasms. All the way up, I've had periods where the spasms were so bad I just didn't know what to do with myself. I couldn't get rid of them, and there was no way to get comfortable. Nothing helped. But I kept telling myself that the next increase would sort it out. That's not going to be the case on the way down. In fact, it's going to be the other way around; each time, I do a decrease and experience those pains, I'm going to know that it's only going to get worse with the next change.

So what's the point in doing the increase to 80mg, when I know that all that’s going to happen is I'll lose a week to the dizziness and breathing troubles, the shoulder pain will get worse, I'll get a few days where everything is tantalisingly better, then the side-effects will kick in again?

My bizarre conviction that 80mg was the magic number, where the morphine would suddenly start to work, is looking increasingly that – bizarre. How could it possibly suddenly start helping, to the extent that these side-effects seemed acceptable, just by adding another 10mg? It can't. Instead, I'll spend the next four weeks cycling through rage, depression, pseudofeelings and oversensitivity; I'll have my arm in a sling to try and minimise the migraines; the shoulder pain will be different to the norm, but not noticeably better and the muscle spasms will cause as many problems as the shoulder pain itself. And at the end of it, I'll finally concede that the morphine doesn't work, and have to start decreasing it to wean myself off.

All that final increase will have done, then, is give me an additional painful and distressing decrease to do, because my body will have got used to that dosage and won't want to have less. I’d be better off just starting the decreases from here. So like I said, I seem to have decided to come off the morphine.

Saturday, 3 October 2009

Choice? What choice?

I wish I was dead. I know it's not real, I know it's the pills talking, and if it follows the usual pattern, it should only last a day or two. But right now, the thing I want most in the world is to be dead. I'm sorry, I know I shouldn't really say stuff like that, but I can't help it. I just wish I was dead.

I haven't been able to write for weeks because the morphine leaves me so foggy, and because right now, writing about it breaks my heart. But it's breaking anyway, so why not.

I went to the Pain Clinic on Monday. He totally floored me by saying, very directly, that if the morphine's not helping the pain, and the side effects are so awful, there's no point taking it. I should just come off it. But he has nothing to offer in it's place, so he's talking about no pain relief at all.

It's not like I haven't thought about this myself - hell, I went in there planning to raise exactly the same question - but I was expecting him to tell me I was in too much of a hurry again, to give it time, that I was still on a low dose. Instead, he tells me that if it hasn't worked by now, it's not going to, so I might as well give up.

I've had this thing in my head all along, that 80mg would be the magic number; that that would be the point at which it started doing some good. Don't ask me why - there's no reason for it, it's just always been there. I was on 60mg when I saw him, planning to increase to 70 that day. I told him my instinct was to keep going to 80, just to satisfy myself; either it would work, and prove him wrong, or it wouldn't, but at least I'd know I'd tried. Because the side effects are so evil, there's no way I could go through all this again if I regretted not finding out.

So I did the increase on Monday, as planned. I don't know whether I'm being particularly sensitive to them because I'm hyper-observant looking for any improvement in the pain, but the side effects seem so much worse this time. The panic attacks at night are so bad I can't even describe them. Then there's the breathing problems and the dizziness. I itch all over, I'm starving hungry but feel sick when I eat. I can't think straight, I can't write, I can't follow simple instructions or do the simplest of tasks. It's wretched. And then there's the emotional turmoil - the rage, depression, weeping, 'pseudofeelings' (reacting to things as though I'm feeling one way, when actually I'm feeling something completely different, so everything seems fake and superimposed). Oh, and then of course there's the fact that the pain is worse than it was before!

I don't think I can do it all again, just to get to the magic 80mg. But if I don't, then I went through this for nothing, because there's no improvement in the pain, so all the higher dose has done is cause more side effects. If I do go through with the final increase, I have to have all the big side effects again, worse, then just sit and tolerate the ongoing breathlessness, fatigue, and emotional wobbles for weeks, to be sure there's no improvement in the pain, and to see they ever actually go away. I stayed at 60mg for 3 weeks and was still cycling through depression, rage, pseudofeelings and oversensitivity at the end of it. I was still getting breathing problems and dizziness almost daily. So either that's 'normal' on these meds, or it takes more than 3 weeks for it all to settle down. (For me - apparently, it's only supposed to take 3-4 days!)

So after going through all that, I'll then have to decide which is worse - living in a drugged-out haze where I can't trust my emotions, where it's actually the pills that prevent me doing things and where the pain's still there; or go through months of decreasing the pills - which will be as bad as increasing, if not worse - to end up with no pain relief whatsoever.

Some choice! I know that some of the pain I get now is caused by the opiates - (the back spasms) and I also know that the shoulder pain itself is different on these pills (more crampy and made worse by heat), so I realise it's possible things could be better on no meds. I've heard of people who've found that. But none of them seemed to be as debilitated by their pain as I am, so maybe it just wasn't as bad (or maybe I'm a wimp).

But at this point, I don't know what to think, what to hope for, what to do. I feel like shit on the meds, but if they suddenly kill the pain, will that seem a fair price for the stranglehold they have on my life? But just how bad would the pain be on no meds? Would I be able to think enough through it to appreciate the fact that I've got my brain back? Even the pain itself makes me dizzy and breathless when it's really bad, so things could be just as bad.

What the hell am I supposed to do?