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The dangers of the medication lottery . . .

Posted Sep 23 2013 6:57pm

A Caveat – I don’t really expect you to read this. I’m writing it to get it out of my head, before it tips me into a breakdown. So why publish it, I hear you ask?

Good question, and I’m not sure. I do know it’s not an appeal for sympathy, though.

Having spent this morning having my legs debrided by the nurses, and much of the rest of the day sleeping through the resultant pain, I’m glad it’s over.

Sadly, it all starts again tomorrow, and the day after, and the…   Well, you get the picture.

The situation has become intolerable – there has to be an end – and yet, there isn’t. That’s not just what I believe – I’ve been told as much by one of my GPs and by the nurses too. The pain continues as long as I continue – a fact that has a sinister and remorseless logic all its own.

The nurses come, they do their thing, and go on their merry way, trailing the wreckage of my life in their wake. Not, I hasten to add, that this is their fault. And it’s not just me, of course, there are many of us suffering from lymphoedema, and I do understand that the nurses need to remain detached, yet if my experience is at all typical, there is absolutely no support system in place for the patients, and no really effective pain management (simply having dressings changed brings a whole new level of agony into play), and yet we need both as much as, say, any cancer sufferer does.

It’s almost exactly a year since the pain in my legs shot off the upper end of the scale and never came back down – nor does it show any signs of ever doing so and, god knows, it was bad enough before that day. As I’ve taken to saying, when asked, on a scale of 1 to 10, it’s never less than a solid 15. Of course, it matters not one iota what value one ascribes to these numbers, once you hit the top it means just one thing – game over.

It’s pushed me to the brink of suicide once already, and I can feel the urge building again. Last time I managed to get some degree of pain control going, though my GPs haven’t stopped pissing about with it since – and every time the nurses ask for a review of my pain meds, I wind up with less, that’s if they respond at all.

At my last review, all my analgesia was stopped except morphine, 60mg of Zomorph every 12 hours, with Oramorph (liquid), at 10ml every 4 to 6 hours. I’ve been very circumspect with the latter, keeping it to a maximum of 2 doses a day, because I know one GP is just waiting in the wings to claim I’m taking too much. I’m not – and I need to take much more – 10ml every 6 hours at least –  if I’m to survive this. I’m currently waiting for a repeat meds delivery, and what I get is entirely in the lap of whatever gods there might be – it really is a lottery, and a dangerous one, too, given my present state.

I fear, though, I might have been too clever for my own good, and holding back on the Oramorph is likely to be interpreted by that pestiferous GP as evidence that I don’t really need it. Oh well, too late now, and I’ll have to play the cards I’m dealt.

I have an appointment with a vascular surgeon in three weeks time and if he has nothing but more of the same to offer – which, from what I’ve been told seems likely – then, sorry, but I’m done with this crap. My right leg is by far the worst and, if it can’t be fixed I want it gone.

The nurses don’t believe I’m serious, which means no support there, but they’d better believe it, because I am deadly serious. I can live without my leg – I cannot live with it.

Note: The nurses were speculating this morning about the nature of my current leg infection, as it doesn’t look like cellulitis (which is non-specific anyway). My guess is it’s MRSA or, judging by the stench, something worse.


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