David Gillon

Tired, so flumped out on the three-seat-sofa (recently liberated from several months use as an extra storage area) for three hours.

Woke up with hips screaming, which was puzzling as even sleeping on the far-too-short two-seat-sofa doesn't normally trigger them this way.

It's taken me an hour and a half to realise that I'd forgotten to renew my butrans patch (should have been done Tuesday), the dosage is out of my system, and this used to be my normal pre-painkillers.

All hail better living through opiates!

(Stumbles off to find butrans).

I just slept from 8 'til 8, unfortunately that's 8AM through 8PM rather than vice-versa, and I still feel half awake. It looks like it was a gorgeous day, but I've basically turned nocturnal. That's largely down to increasing my butrans (painkiller) dosage from 5 µg/h to 10 µg/h, it's letting me sleep normally (or, given I just slept 12 hours, abnormally), but it robs me of the flexibility I need to shift my sleeping patterns back to normal once pain disrupts them -- which it does regularly. Now that negative comes tempered with a very large positive, increasing my dosage has taken my pain levels back to what I would describe as normal, but it's still a problem in its own right. 



The change in dosage has also shown me something I'd been only semi-aware of, which was that I was becoming less and less able to tolerate sitting at my PC (as opposed to lying down using my laptop). It wasn't that I'd temporarily lost interest in the computer graphics I use the PC for, which was what I'd assumed, just that I couldn't actually sit there for long enough to do anything. That seems to have been gradually building since Christmas, so if you assume that's symptomatic of my pain in general then maybe the roots of the early May flare-up go back further than I thought. Up the dosage and suddenly I can sit at the PC and do stuff again. Not sit at it freely, I still get the building levels of pain that caused me problems while I was working, but at least it's not a case of reaching intolerable levels of pain within the first five minutes any more. And what applies there probably applies to everything I do -- pain can creep up on you and 'normal' can change without you really being aware of it.



So I'm back to what theoretically passes for normal in terms of me and pain, having the choice to be pain free by lying down, or in increasing pain by doing stuff that involves sitting or standing. That's limiting, disabling even ;) , but it is normal for me and something I can live with. OTOH I'm not so sure that I can tolerate the sleepiness indefinitely. It feels like there is a wave of primal sleep perched at the front of my brain and ready to wash down over me at the faintest opportunity, I've had at least a couple of instances of dropping straight into vivid dreams in the middle of doing stuff and thank god I turned off the bath taps before falling asleep for two hours yesterday ! Cognitively I'm definitely off, I had two people take offence at postings on other boards yesterday where I really didn't mean to be offensive. Things are just slipping my mind and I'm really not eager to try driving just yet, nor dealing with authority. I have a hospital appointment to sort out, my disabled parking badge to renew and an assessment for ESA to reschedule and I really don't feel up to any of it.



Sleepiness is a recognised side-effect of Butrans, I don't get it on 5 µg/h, or at least not noticeably so, but obviously I do get it on 10ug/h (which makes me feel a complete wimp when other people I know are functional on 52.5 or 70 µg/h). I spent six months last year trying to build a tolerance to it on 10 µg/h without noticeable success and, even though I really wanted to try increasing it to 20 µg/h, ultimately I chose to drop back to 5 µg/h even if that means dealing with more pain. That experience was why I was still reluctant to have to increase it even after a week of agonising muscle spasms. Ultimately I recognised that I needed to give my body a break to try and allow things to settle, even at the cost of several weeks of sleep-walking zombieness, but if I'm still in a flare-up when I try to drop back down to 5 µg/h I'm going to be facing a very difficult choice.



For all that I've just pointed out the problems I'm having with Butrans, I still think it's the most beneficial painkiller I've been on. It's the only thing I've tried with a reliable 24/7 effect, I'm just not able to tolerate as high a dose as would be necessary to eliminate all of my pain. What it has done is knock out maybe the bottom 20% of pain, the comparatively minor stuff that wears you down by being there all of the time. I don't wake up in pain anymore and it really does give me the chance to decide whether I want to be in pain or not, and even if the choice, lie flat in comfort or do stuff in pain, is physically limiting, there's still a lot to be said for having the opportunity to make it. 



And now, if you'll excuse me, I think I need to go and take a nap ;)