14 December 2012

The valley

Last time I wrote everything was looking up. I was about 6 weeks post surgery, had the final surgical signoff from my surgeon, energy was returning and I was enjoying being back at work.

How things change.

Healing from surgery has continued but quality of life hasn't. I seem to have entered one of those terrible acute times, such as I haven't had for probably 8 years or more, certainly since small daughter was born over 6 years ago and I had mirena #1. So what went wrong? I haven't the faintest idea really: all I know is that that terrible, chronic pain has returned, the kind that grabs me right down deep in my abdomen and savages me like a lion over a kill. What's worse is that I appear to have had a bad reaction to the major medication my surgeon gave me, the one that was supposed to reprogramme my brain about chronic pain. Hubby and I can date the increase in fainting and the dissocation of this from pain squarely to when this drug got to full strength in my system, and it had got to the point when there wasn't a day going by when I wasn't severely dizzy or blacking out. Horribly embarrassing and really getting in the way of life.

But now, guess what? The pain is back (because I'm carefully stepping off the pain meds - carefully and slowly under medical supervision because the side-effects of stopping can be awful), and I seem to be existing on a diet of strong painkillers. Thank God, no trips to hospital for morphine yet but suspect it's only a matter of time. Nearly needed one on Monday night: hubby and I were watching the end of The Lord of the Rings: Return of the King in preparation for release of The Hobbit: An unexpected journey when the pain hit me hard - got to a 9/10 on my personal pain scale. Not fun. I told hubby that if my selection of prescribed painkillers didn't work within 15 minutes I needed a trip in the ambulance - he would have had to stay behind because it was late and small daughter was asleep.

My doctor had told me not to drive while coming off the meds and so my boss picked me up on the way through on Tuesday morning: I nearly didn't go because of the night before but I had no way of getting hold of him to tell him not to divert because he has no mobile reception at his place and I didn't think he'd appreciate a call at 5.30am waking all the rugrats! I went in, slightly uneasy about what the day would hold: and rightly so - the pain hit me again mid-morning and plastered me over the floor. My poor friend who has helped me so often this year got another one of those panicked texts and he found me again - this time though it was because of the pain not the drugs. I think I scared him this time: he's never seen me really sore and it got to an 8.5/10. I suspect I very nearly broke his hand when the highest pain peak came. The national safety manager (my dotted-line report) happened to be on site on Tuesday and fortunately I'd just spent a few minutes filling him in on how bad it had become before we went into the ops meeting that I had to leave because the pain had got unbearable, and then he came in when I was busy breaking my friend's hand, so he knows what it's like too. As much as anyone can who is outside of it.

I have spent most of this week working from home, since the unfortunate pain/fainting episode on Tuesday. I have an appointment with a pain specialist here in Rotorua on Monday and I hope he has some answers, or at least some ideas. At present I need a huge cocktail of painkillers just to get out of bed in the mornings and I am struggling mentally too. Mornings and mid-afternoons are worst. In between I can more or less function and manage to get some work done. Work has been amazing: I was really worried that they would figure out that having me there was actually a risk for them, but when I finally broke and confessed that fear to my boss and my friend (who's part of the management team with me) they both said that there was nothing to worry about there.

What bothers me most is that I seem to be running out of options. My surgeon in Hamilton discharged me saying that there was nothing more he could do for me surgically, but left me on this medication that has messed me up. All my other surgeons were hugely supportive all the time: they did surgery but it was secondary to the long-term management options. I'm not sure whether he's into long-term management but he's left me in a huge mess because he's discharged me without making sure that I'm actually doing okay. Which I'm not. I don't know whether the pain specialist can manage the other issues around hormonal changes/endometriosis or whether he's just pain - but I do need him and hope he's got some new ideas for dealing with the pain because I'm very nearly at the end of my tether. My GP has been wonderfully supportive: she's referred me all over the place and she's managing my withdrawal off the chronic pain meds. The issue there is that if I come off too fast it could trigger some extremely unpleasant and dangerous effects; and as I come off the pain increases. Lose-Lose.

Hubby is looking pretty tired too: it's always hard on him because he knows there is nothing he can do and he just has to sit by and watch, and get his hand broken. Or so he thinks: his support means more to me than I can say but it's hard because this messes with my moods and emotions too, so I get down very quickly. I wish there was a way out of this. I am trying not to hope too much for Monday's appointment with the pain specialist but even a reduction of 30% in the pain level would help a lot. At least it might make me functional, mostly. Less drugs washing around would be nice too....

I rang an old friend of mine to talk things over with last night because hubby and I have been chewing it over until we're both sick of it, and my body/mind is so messed up it's hard to think straight anyway. My friend had a couple of good ideas and anyway it was just nice to talk to someone who's known me for ages and ages (longer than I've known hubby), who's seen the acute and chronic phases and knows how much they hurt - and who just cares and is happy to let me unload some of the stuff in my head. The Community knows too, and one of the Brothers that I am particularly close to knows the whole lot - I dumped on him too. He knows about chronic pain because he's got it too - he had heart surgery just after I transferred my Profession (although we'd been talking for months before that so I knew him quite well by then) and we've grown very close over the years.

Thank God for my holding cross: it's a fairly solid chunk of rimu shaped to fit my hand, made personally for me by an old friend from St James' who is now dead. It lives in my pocket and I love holding and praying with it for other reasons, but it's amazing when I'm in pain: a rosary would smash with the force that I grip this thing with and yet it's fine.

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