I keep having the same, utterly futile, conversations with my nurses.
Conversation No. 1 – Staff Nurse: “You must agree to compression or your ulcer won’t heal.”
My reply: Assuming I accept that as a given,” (I don’t believe it is – no-one even thinks beyond compression**), “what can you do about the pain, and the fact that it doesn’t work for me?”
**They don’t think outside the box because they don’t even know they’re in a box.
Consider the inconvenient facts:-
Fact 1: Compression works. That’s a given
Fact 2: It doesn’t work for everyone. That, too, is a given.
Fact 3: Compression is very, often extremely, painful. My present dressing, a piece of Aquacel Ag (think gauze), topped with an absorbent adhesive pad, is almost unbearably painful. The four layers of elastic bandage and cotton wadding – think slightly flexible cast – required for compression actually IS unbearable. I will not allow any more pain, on that scale, into my life. (At least, not without very much better analgesia.) My body, my rules.
This morning the nurse applied the Aquacel to my ulcer without warning me (I was talking to the auxiliary nurse at the time, the only one with any understanding at all), the pain was so horrendous and unexpected, I screamed.
And the more I think about it the more I’m sure she did it deliberately, to see if it’s as bad as I claim, because I know bloody well she’s capable of doing it without causing such extreme pain.
Fact 4: I’ve tried it three times, and three times it’s gone bad on me. Why would a fourth time be different? I asked the question this morning – the answer was silence.
Fact 5: Constantly repeating the same actions and expecting a different result is the very definition of insanity.
Fact 6: I’m sure they think that constant nagging will wear down my resistance. It won’t, but it might very well push me over the edge.
Conversation No. 2: (In which it’s obvious the nurses have little grasp of infection control.). Staff Nurse: “The black marks on your ulcer are caused by the silver you know…” (Thinks: I bloody well told you that three weeks ago, when you didn’t know what caused them! Actually caused by oxidised silver.) You shouldn’t be using silver when you don’t have an infection.
Me: “I know. I’m using them to prevent infection – bactericides are effective for that.”
Background: The prophylactic use of bactericidal silver dressings was agreed with the Tissue Viability Nurse early this year. The fact that last year I almost died from repeated infections, culminating in a massive MRSA infection (when no bactericidal dressings were used), while this year, using them at my instigation, I have remained free of infections surely speaks for itself?
That “An ounce of prevention is worth a pound of cure” (attributed to Benjamin Franklin), is as true in a medical context as it was in its original context as justification for establishing a volunteer fire department in Philadelphia in 1736 simply cannot be denied.
Why, then, are nurses having such a hard time understanding this?
It’s not as if we haven’t been here before – it crops up on a regular basis – and it’s true that the Aquacel Ag PIL suggests a time limit for use but it’s not carved in stone and while the dressings continue to do what I expect of them, I see no reason, in the light of my proven extreme susceptibility to infection, to abandon them.
And finally we come to Conversation No. 3: “You must keep your leg elevated!”
Again, no answer.
Consider the facts here, too:-
Fact 1: I live alone. Everything that needs doing, from getting water for my all-too-frequent drugs,** taking rubbish out to the bins, to shopping online, is done by me. If I sit with my leg elevated – as I accept I should in a perfect world*** – nothing gets done.
**Assuming I have to take all my drugs, I’m taking something at 19 points throughout the day, and 16 of those require me to fetch water. Supplements add another 3 events, also needing water.
***But I live in the real world, and other things get in the way.
Fact 2: Between taking my diuretic at 08.30 and some point in the afternoon (or evening if I also take a midday dose), I pee roughly every 15 minutes (often in a bucket as the 6 yards to and from the bathroom is beyond me). Add in everything else that I have to do in the course of a day (I’m sure the nurses think I do nothing but sit here, but I do that only on the worst of days), and there simply isn’t time to sit with my leg elevated, even though I’ve built a natty leg support that enables me to do so without pain.
Fact 3: When I’m in bed at night, with my leg elevated, the fluid in it drains away. When I get up again, it all comes rushing back and within seconds I’m in absolute agony as it tries to force its way into spaces that have closed up. The only way I can deal with this is to take Oramorph, a generous 10ml, an hour or more before I have to get up. And it still hurts like a bastard.
This, of course, also happens when I sit with my leg elevated, every time I have to get up for a pee, take meds, cook food – whatever. There isn’t enough Oramorph to deal with that – I’d be taking it 2 or 3 times an hour, it’d kill me.
Final Fact: Unless I can elevate my leg and stay that way for 4 hours at least (the minimum interval at which I can take Oramorph) – which clearly isn’t possible – then the pain would be insupportable.
No time, peeing too often, too many other things to do even in my restricted life, and too much pain to elevate my leg – that’s the bottom line.
And do the nurses comprehend any of this? Well, perhaps one of them does, but no more than that. As for the rest, I don’t think they want to comprehend – all must bend to their will.
Well bugger that!
Footnote: The reorganisation of my flat, scheduled for this weekend, which I’ve already written about, will allow me to rearrange things so that sitting, say, at this computer with my leg elevated, will be possible. Of course, none of the other impediments to this will go away!