Is it me…?

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?”

No answer.

**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!”

Me: “How?”

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!

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11 thoughts on “Is it me…?

  1. Absolutely hit the nail on the head there Ron.

    I have had the same conversations, though don’t have an ulcer [yet?!], especially number 3 about keeping my legs elevated. Nobody seems to understand that keeping your legs up can be just as painful as not, and like you said, they need to stay up for hours to drain and then as soon as you put it down again… I could take an axe to mine sometimes.I keep forgetting to take the oramorph to bed… but luckily I have my wife.

    I wonder if your nurses have ever read your blog??

    As an aside, if you’re interested, my right leg ‘opened up’ a few weeks ago now for no apparent reason. I realised my leg was wet and got a shock when I looked. Its still leaking yellowy liquid 3 weeks later and only half healed. I put a photo on my blog in a post [inspired by you & some others], explaining a bit about me and my ‘conditions’after being asked by several people what’s actually wrong with me.
    Its at: http://underoccupied.net/2014/10/10/and-my-conditions-are/

    My wife just said… “No, its not you. Its those ‘professional types’ who think they know best coz they’ve had a bit of training”. I concur.
    Take it easy.
    Paul

    • Pretty sure the nurses haven’t read my blog – they’re still talking to me! Or at me . . .

      The yellow fluid is lymph, and it’s very high in protein and corrosive. At one point I was losing 3 litres a day from my right leg alone (plus whatever escaped and left puddles wherever I stood for more than a few minutes). If you’re losing a lot you need to step up your protein intake to compensate for the losses. Over a year on from when mine was at its worst, they still have me on a high-protein diet.

      The stuff ruins footwear, as it sets like cement.

      Make sure you get it swabbed, to check for infections, on a regular basis too (the smell is a good clue – normally it’ll smell like raw meat – which is what it is – if it gets infected it’ll smell foul). Whether or not you get an ulcer (and whether or not it heals if you do), is simply down to luck as, indeed, is whether compression works or not.

      Oh, and something to bear in mind if you’re still leaking when summer returns – you’ll attract flies and wasps!

      Have fun!

      Ron.

      • Its like a constant slow drip down my leg, so nothing too major. But I did notice a smell I couldn’t place. When the dressing is changed, it is rock-hard like cement as you said. Swabbed yesterday at hospital btw. Didn’t know about the corrosive bit though!! Feel like an alien out of the alien movies now… acid blood [or lymph fluid]. Hahaha!!
        Anyway, looking forward to next blog. Cheers Ron

          • Ta Ron. Seen the lymph site… I think you told me about it ages ago! Very informative too. Will check out he other in the morning.
            Weird stuff this lymph fluid. Not sure I like the idea of it just sloshing about. Funny though!!

        • Just a thought, but try and get referred to the Community Nurses. I know I have my problems, but the fact is they do have access to far better dressings than the hospital- even better than the specialist vascular clinics. Seems bizarre, but hospitals are subject to nationally-agreed contracts, and apparently the Nurses aren’t. In addition, the costs are split locally – some on the Nurse’s budget, some on your GP’s.

          And, of course, the nurses come to you, which saves a lot of hassle.

    • Sounds like a plan, Cat 🙂

      Thing is, I’ve been ill since I was a toddler, and probably because of that I’ve always had an interest in medicine. Which is probably why I’m still alive. When I’ve been in hospital, though, I was horrified by how little people knew about their own conditions. One guy, told he might be HIV-positive, spent the rest of the day telling his visitors he had hives!

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