On Wednesday morning, the nurse was horrified by the state of my legs, and phoned the GP surgery to tell them I needed an urgent home visit.
I didn’t get one – I got a phone call instead.
In three years none of my GPs have ever seen my legs – they refuse to look at them because, to quote one of them “They’re horrible!” – I wonder what they think it’s like to have to live with them? With the blood, the pain, the suppuration and the stink? They have no real idea of how horrendous that is. And they sure as hell can’t comprehend the pain.
>Trigger warning – suicide.<
Who, depending on his response, might soon become my former vascular surgeon. Doctors’ names have been redacted, no matter how justified I might be in publishing them – I still need them so would rather not piss them off just yet.
Dear Mr. Vascular Surgeon,
Re: Morphine Sulphate Oral Solution (Oramorph, for the sake of brevity),
In response to your request, my Zomorph was increased to 130mg b.d. after my last appointment. I am finding, however, that the expected reduction in pain and, thus, in my Oramorph consumption, is elusive.
It’s been only three days since I took to my wheelchair more or less full time, and I have no doubt at all that this is the way forward.
It’s not perfect – my flat is largely unsuitable but I don’t want to move as my neighbours are reasonably quiet – and if you’ve never lived in a flat, you have no idea how important that can be.
There’s another reason, too – I don’t have the spoons to survive a move. My last move, five years ago, wiped me out, and I’m a hell of a lot worse now than I was then.
Well, I’ve spent the afternoon and most of the evening in my chair, and my pain has been greatly improved. In addition, the dramatic worsening that happens every night between 21.00 and 21.30 simply didn’t happen (though it’s setting in now, at almost midnight). For the second day in succession I’ve got by on two shots of Oramorph. Yesterday that was a major battle, today it wasn’t.
History has been made – I’m sitting here, tweeting from my powerchair for the very first time.
Since my surgery, now, isn’t guaranteed to happen wheels are essential. Yep, I know I’ve said that before, but I keep putting it off as there’s no way back once committed.
Increasing my Zomorph from 100mg to 130mg b.d. (in 10mg steps due to the risk of catastrophic respiratory failure if I hit the full 30mg increase all at once), has resulted in much more pain, not less. This, to my surprise, is not entirely unknown, though the research was relatively recently published on January 6, 2013.
Warning – contains ulcer photos some of you will find gross.
Yesterday – the first for several years – was a day in which pain featured only peripherally, due in no small part to the increase in medication enforced by the vascular surgeon.
That increase – which took an unforgiveable three weeks to get to me via my GP – was immediately followed by an attempt by him to stop my supply of Oramorph. I got it reinstated after dishing out a bollocking that surprised even me, during which he complained that I don’t keep him informed enough – a charge that’s only partly true.
Updated November 14 for clarity and typos.
This morning I met with the vascular surgeon.
To be honest, it didn’t start well, and a couple of nurses descended upon me and asked would I be OK to move from my powerchair to the couch. I’d only just begun to realises that, for a wonder, I had no pain at all (after an agonising and horribly early start to my day), so I said if they could do their thing while I stayed in my chair, I’d be happier as I had no desire to awaken my leg, but, if I really had to, I could move. We agreed I could stay where I was.
Trigger warning – suicide mentioned.
Next Tuesday morning an event that has taken two years of incessant pleading and nagging will finally happen – I get to meet a vascular surgeon who has expressed a willingness, no doubt hedged about by caveats, to possibly amputate my right leg below the knee.
Actually, that crisis was brought about by an unwillingness on the part of my GP to prescribe effective analgesia. In the end I had to go over his head to the senior partner in the practice. By then it had taken a year.
My GP was – probably still is – convinced that a effective dose of morphine would shut down my breathing reflex. True, it might, but might is a universe away from will, yet he treated me as if possibility equalled certainty, and it does not.
Today I wrote and published a normal blog post before 09.15. OK, it was just an addendum to the second post yesterday, but I can’t remember how long it is since overwhelming pain prevented me from doing something that used to be the norm.
Today, I tweaked my pain meds, adding more morphine.