Taking the Stairs

Sunday, 3 July 2011

Very bad night; no sleep, lot of pain, four extra immed-release morphine pills.

The pain has been bad from the get-go today. Managed to hold off till 10 for the first top-up pills, but had to go to bed to let it work. (I do find the morphine works better when I can just relax and doze if necessary.). I'm going to need more pills pretty soon.

wide awake, in pain, fed up

Had enough

So much for my good day. It kicked off at 9: took two immediate release pills and it calmed down. Until 12.30am. Took two more but they're not helping.

I'm lying here, in agony, thinking of ways to make it all disappear. Top of my list - an unexpected swan dive halfway through a helicopter sightseeing trip.

One of these days, I'll stop talking and start doing.

Saturday, 2 July 2011

Interesting...

So far today, I haven't taken any top-up morphine.

I've doubled two of the three slow release doses and it's worked well. I didn't double the lunchtime dose, so that I could still triple the evening one (as per the past week), to try and get me through the night.

I've slept quite a bit today and haven't actually tried to do anything. There have been a few worrying warning twinges of pain, but I've managed to ignore them.

I also did more research into the new drug the pain doc mentioned, and am less certain that the right answer is to stay as I am. I need to mull it over, but when I managed to get on the website and look at the actual trial results, I realised the allowable daily dose is a lot more than I thought, and I'm clearer now on how it actually works.

I found reports of it on a couple of pain forums, and everyone agreed it's no better than what I'm on. But 'everyone' is a bit misleading - the drug is so new, very few people have tried it. All the more because many people - actually, the majority expressing interest in it - are being denied it by their health trust, due to cost.

I think I would need to see some people on my levels of morphine saying it's better, to make me change over. And at the moment, those people are the ones saying it's not worth changing.

Since pain levels were so bad yesterday and the day before, and I had to take so many pills, I decided to just go ahead and take double slow release morphine at 6am.

As usually happens the first time I double a dose, it knocked me out. I woke up at 10.30am feeling like I'd had a really good sleep.

The pain is already starting to bubble up badly after just half an hour sitting up, and it's going to be a nightmare trying to work the Lofepramine and the rest of the pills in without feeling sick.

But soooo nice to get some sleep.

Friday, 1 July 2011

Suffocating

I feel overwhelmed by pain and pointlessness today.

I've spent hours trying to sort out the mess that my doctor has made of my insurance claim. The pain is unbearable, I'm taking morphine like Smarties and still I can't move. And I'm still shellshocked from yesterday's Pain Clinic appointment. It just feels like it's all going wrong, all going against me and there's not a damned thing I can do about it.

The doctor messed up the medical report that my insurance claim will depend on, and I've had to spend all afternoon writing letters to fix it. I feel like not only will it mean my insurance is denied, but it will sour my relationship with the doc, and I badly need his support. He'll have to find out what I've said, and it's all true, but what if he takes a dislike to me and gets difficult over prescriptions and sick notes! That terrifies me.

The fact that the pain is so awful right now only adds to that, as does the conversation with the consultant yesterday. He told me that I can keep hiking and hiking the morphine ad infinitum. Or I can try this new drug that offers the same kind of pain relief but with fewer opiates. So, fewer side effects.

Sounds perfect? Except for the fact that you can only take so much a day, and after that, if it's still bad, you have to 'find another option'. Which basically means you're fucked.

Take today for example. The pain went beyond 'normal' before 8am. My only option all day has been to throw morphine at it (which has only been partially effective, because I've had to force myself to stay awake and alert to sort out the doctor's mess). On this new drug, there'd be nothing you could throw at it. Which would mean a day in unbelievable agony, the like of which I can't even contemplate.

I'd never be able to tolerate it; I'd wind up slitting my wrists just to make it stop.

The info on this drug talks about it being tested against less than half the morphine I'm on per day. Which means the chances of it being in any way adequate are almost zero. Which in turn means I have no option other than constantly rising morphine levels.

It all seems so suffocating and deathly. I don't know how to navigate it. How do I keep surviving through all this. I can't. I don't want to. I just want to die.

Twice today I've tried sitting in a chair and twice I've been overcome by enormous pain.

The first time it took about an hour, the second about 20 minutes. The first time I took three Oxynorm and went to bed, adding an extra Oxycontin an hour later.

I've already taken double Oxycontin and double Oxynorm, so basically I'm fucked for at least another hour. The pain is hideous and unending, I don't know what I'm going to do. I feel like absolute shit and I'm clearly going to be confined for bed. Again.