This morning, in a discussion with the nurses about my deteriorating leg ulcer, all they can offer is compression – for which read MORE PAIN! Before they can do that they have to run an ultrasound test, and to do that they also have to check my lower leg blood pressure. And guess where the blood pressure cuff goes – yep, right on the ulcer. And that is just not going to happen.
At the moment I have a lightweight dressing on it, covered with two layers of very light tubular bandage. That, primarily, is sufficient to stop my leg swelling as well as keeping the dressing in place. It’s also staggeringly painful.
This morning I’ve take 90mg of Zomorph (sustained-release morphine), and as usual before a dressing change, 10ml Oramorph (liquid morphine containing 10mg of morphine per 5ml). Despite that the pain is excruciating and in an attempt to shut it down I’ve taken another 5ml of Oramorph. The result after 20 minutes? None at all.
Not surprising, as I know from past experience that it can take 30ml of Oramorph (60mg morphine), to shut down breakthrough pain of this severity. In fact, as I’m never free of severe pain, I don’t see how it can be classed as breakthrough at all. It’s more or less permanent.
This is my ulcer, right now. On my screen (19”, aspect ratio 4:3), it displays as roughly life-size, which is 4.7cm by 5.2cm. It’s not as deep as it was, but it is spreading laterally.
This morning we got a swab result back from the hospital – they said it’s normal. What the hell does that mean? For me, its normal state is massively infected, and from the way it feels, and smells, it’s infected now.
I have life-long experience with infections. Primarily lung, but throughout last year also my leg, and I know what infections smell like, taste like (no, I’m not going to lick it!), and look like – this, to me, is infected.
The nurses could see how much pain I was in and still want to squash my ulcer under a BP cuff – and I simply will not permit that.
They said it’s the only location they can check my BP, so I asked them what if I’d had an amputation just above the point where the ulcer is? Surely, then, they’d have to find an alternative location?
Oh, that won’t happen, they said, they’d amputate at the knee. Which is rubbish. I’ve known two guys with mid/lower shin amputations, and there are a couple of paralympic athletes too, so it happens.
That aside, compression, in the second decade of the 21st century, borders on the mediaeval – there must be something else besides a tight bandage that causes extreme pain. I know how painful it is, I’ve been in compression three times already and three times it’s made my condition worse – there’s not going to be a fourth time.
The idea of compression is that it aids the function of the Calf Muscle Pump (CMP). Oxygenated blood flows into your muscles via arteries (yes, I know, Anatomy 101, but a surprising number of people don’t know how their body works), and out again via the veins – and that’s where it can go wrong. Arterial pressure pushes blood though to the veins at the lowest point in the body, but it’s not sufficient to push the blood, against gravity, back to the heart, and this is where muscles as pumps come into play, especially the CMP.
In the CMP, as the muscle works when you walk, squeezing the veins, pushing the blood up the leg (a system of valves then prevents it flowing back – unless the valves are buggered, and that’s where compression comes in, preventing backflow.
So far, so good, but everything I’ve read says that this only works if I’m able to walk – it’s the action of walking, flexing and relaxing the calf muscles, that powers the CMP – and I’m not (NB: 12.41, Friday, July 18 – the pain in my right calf is monstrous, and all I’m doing is sitting and typing).
The nurses argue that this is wrong, and just sitting around with my leg tightly bound will work. And that, ladies and gentlemen, comes under the heading of Total Bollocks. A muscular pump cannot possibly work if the muscles themselves aren’t moving. I accept that compression will stop the blood pooling in my lower leg – it’ll simply pool elsewhere.** That’s not the CMP working, that’s just bloody common sense.
**The light tubular bandage I mentioned, above, stops my calves swelling – my thighs swell instead!
Finally, and not for the first time – or, I suspect, the last – I raised the question of surgery. If my leg doesn’t work, and can’t be made to work, and all the medics have to offer me is even more pain, then screw it, I’d be better off without it.
Logically, a prosthesis will hurt less and, overall, I’d be less crippled than I am now. At the moment I can’t even use my powerchair to the degree I used to, as the jolting if I use it outdoors – roads and pavements in Wirral are a disgrace – is agonising. Even within the building, bumping over threshold plates has to be done very slowly for the same reason.
Amputate my foot and lower calf and those problems go away. A prosthesis will enable me to carry out those tasks for which I have to be on my feet (this morning I had a shave and a very cursory wash – it took over an hour, with rest/pain breaks and that’s something I can do maybe once a week if I’m lucky. A prosthesis should make standing less of an ordeal.
I do have a perching stool in the bathroom, but I don’t get on with it, partly because I can’t get close enough to the mirror to shave, and partly because it just doesn’t solve the pain problem.
The nurses, however, don’t want to discuss this beyond saying that a lot of patients feel the same way – not surprised. Surely, though, if there are a lot of us who feel this way, it’s better in the long term, for all concerned, to accede to our wishes?
Right now we are an unending drain on the Community Nurse service’s resources. A couple of weeks in hospital for amputation and recovery, a period of physio, and we’re off the books. Makes sense whichever way you look at it.
Will it happen? In your dreams…