The dangers of the medication lottery . . .

A Caveat – I don’t really expect you to read this. I’m writing it to get it out of my head, before it tips me into a breakdown. So why publish it, I hear you ask?

Good question, and I’m not sure. I do know it’s not an appeal for sympathy, though.

Having spent this morning having my legs debrided by the nurses, and much of the rest of the day sleeping through the resultant pain, I’m glad it’s over.

Sadly, it all starts again tomorrow, and the day after, and the…   Well, you get the picture.

The situation has become intolerable – there has to be an end – and yet, there isn’t. That’s not just what I believe – I’ve been told as much by one of my GPs and by the nurses too. The pain continues as long as I continue – a fact that has a sinister and remorseless logic all its own.

The nurses come, they do their thing, and go on their merry way, trailing the wreckage of my life in their wake. Not, I hasten to add, that this is their fault. And it’s not just me, of course, there are many of us suffering from lymphoedema, and I do understand that the nurses need to remain detached, yet if my experience is at all typical, there is absolutely no support system in place for the patients, and no really effective pain management (simply having dressings changed brings a whole new level of agony into play), and yet we need both as much as, say, any cancer sufferer does.

It’s almost exactly a year since the pain in my legs shot off the upper end of the scale and never came back down – nor does it show any signs of ever doing so and, god knows, it was bad enough before that day. As I’ve taken to saying, when asked, on a scale of 1 to 10, it’s never less than a solid 15. Of course, it matters not one iota what value one ascribes to these numbers, once you hit the top it means just one thing – game over.

It’s pushed me to the brink of suicide once already, and I can feel the urge building again. Last time I managed to get some degree of pain control going, though my GPs haven’t stopped pissing about with it since – and every time the nurses ask for a review of my pain meds, I wind up with less, that’s if they respond at all.

At my last review, all my analgesia was stopped except morphine, 60mg of Zomorph every 12 hours, with Oramorph (liquid), at 10ml every 4 to 6 hours. I’ve been very circumspect with the latter, keeping it to a maximum of 2 doses a day, because I know one GP is just waiting in the wings to claim I’m taking too much. I’m not – and I need to take much more – 10ml every 6 hours at least –  if I’m to survive this. I’m currently waiting for a repeat meds delivery, and what I get is entirely in the lap of whatever gods there might be – it really is a lottery, and a dangerous one, too, given my present state.

I fear, though, I might have been too clever for my own good, and holding back on the Oramorph is likely to be interpreted by that pestiferous GP as evidence that I don’t really need it. Oh well, too late now, and I’ll have to play the cards I’m dealt.

I have an appointment with a vascular surgeon in three weeks time and if he has nothing but more of the same to offer – which, from what I’ve been told seems likely – then, sorry, but I’m done with this crap. My right leg is by far the worst and, if it can’t be fixed I want it gone.

The nurses don’t believe I’m serious, which means no support there, but they’d better believe it, because I am deadly serious. I can live without my leg – I cannot live with it.

Note: The nurses were speculating this morning about the nature of my current leg infection, as it doesn’t look like cellulitis (which is non-specific anyway). My guess is it’s MRSA or, judging by the stench, something worse.

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16 thoughts on “The dangers of the medication lottery . . .

    • Thanks Jayne, and TT.

      Overnight, something I was groping for yesterday, and missing, has finally come into focus.

      All this suffering would be easier to bear if there were any purpose to it, if it were a painful, but necessary, stage on the road to recovery, no matter how long that might be. But it’s not, and it’s knowing that, and that it will never end, that’s proving so emotionally destructive.

      I know, too, that I’m by no means unique, and that there are many people worse off than me, but that doesn’t help, as illness like this isolates us within our own little universe of pain – you can see that every day across Twitter – and I have absolutely no idea what the answer is.

        • Morning Ron

          Had a feeling this might be the tenor of your blogpost…

          Chronic pain is something that will wear you down until you cannot stand anymore – that’s besides the disability implicit in your condition… not to mention other factors such as the fluid, smell and the constant need to manage these aspects with the dressings. Being at breaking point is a daily situation, sounds like.

          Understandably, you are giving a lot of focus to your upcoming appointment and your hopes for a constructive outcome… I just wonder what choices have been offered to you so far ? You say, quite firmly, that you want it gone (the leg)… has that been suggested to you as an option, or is that your own solution ? What about anaesthesia… given your other conditions, that would be extremely risky… epidural ? What about post-operative healing and its likelihood? If you have had some positive responses to all these, then your fear of the op itself is more than worth surmounting. That’s a thought, with general anaesthesia, you don’t know you’re not in control (you’re out of it) but with an epidural you would have to consciously (!) give the professionals control.

          Only asking all these things to better understand, of course.

          To say you are between the proverbial rock and a hard place is putting it mildly.

          If you are thinking ‘..and what’s any of this got to do with you?’ then I will not be offended by silence in this instance, nor in the other, that you are too rough to think beyond that. TC Ron.

          • No choices offered so far – or will be until I see the surgeon. No-one else – nurses, GP, OT – will even discuss the question of surgery.

            There are other options, of course, though not many, like a referral to a lymphoedema-specific pain clinic – take the analgesia out of the erratic hands of the GPs. Right now I have, perhaps, a week of morphine left, including maybe 4 doses of Oramorph. I put my repeat request in over the weekend, I should get it today but I’m not putting money on it.

            Just been delivered and totally screwed up – Zomorph 40mg instead of 60 – completely useless, and no Oramorph at all!

            While it’s true I might not survive surgery, it’s equally true that I might not survive the winter. And looked at from a worst-case perspective, when I get up in the morning, there’s no guarantee I’ll still be alive at bedtime. Sounds melodramatic, I know, but that doesn’t make it any less true – my heart’s shot (calcified aortic valve, heart failure); adrenal glands failed, and the hydrocortisone I have to take to compensate could trigger a gastric bleed at any time, my COPD leaves me vulnerable to any passing bug, not to mention seasonal flu, and thiamine deficiency could simply kill me because that’s what it does.

            Bottom line, then, the risk of surgery adds little to my normal day-to-day risk factors – or stress.

            There’s no way I’d opt for an epidural, either. The thought of even minor surgery terrifies me, the idea of being conscious is unbearable.

            Ron.

            • D’you know, surgery and all other things apart, surely to goodness the very LEAST you could expect is adequate pain relief. It really p***** me off that so many people, you in this instance, with so little energy or wherewithall, have to use the little they’ve got chasing and chivvying -just to get basics. Surely THE most basic is a correct prescription, eh? This is so common.

              However, in between now and your appointment, probably best to try not to go, mentally, down any road too far. See what’s on the table then.

              You heard this one ? I would twitter but it’s too long…

              Capitalism defined…
              A worker sees the boss drive in to work in a beautiful Ferrari and says to him ‘Nice car boss’
              The boss calls him over and quietly says:
              ‘…d’you know, if you work really hard, put in all the hours, do some overtime….I will be able to get another one in a year’s time’

              I will tell you about my bread another time – enough to say that it’s im-proving! Pat x

              • Faxed a letter to my GP telling him I want what we agreed – no response so far, not even a shirty phone call (he doesn’t like being challenged!).

  1. Yes I totally understand if there was healing process happening then theres the result. Unfortunately not completely understood by the medical profession. Ridiculous as we rely on them for help and support

  2. I understand your way of thinking, and can think of no reason to dissaude you from amputation, if the surgeon is like minded. Look after yourself Ron. xXx

  3. To have lived with my leg the way it was would have made me take my life, absolutely positive about that. If my surgeon had not gone along the same lines then I would have seen another, and another because to live with the unbearable pain and the infection spreading so much would have not have been living at all.
    I hope so much that a surgeon will be found who is willing to do the surgery Ron as I know it’s constant pain, never-ending and making you dread the days to come.
    In the meantime, you could ask for an appointment with the pain team as they will do everything that they can to make you comfortable, and are also there to back you with your choices. They are a great help Ron and will be needed anyway if amputation is the way it is going.
    I’m so lucky to have the GP I have, he gives me my meds and will increase them, or decrease them, on the say so of the pain management team. He also listens to me and we are to have a chat on Friday about the cellulites that is continually coming back on my good leg.
    You need to find a surgeon, then really go through everything, then have everything put into place before you have surgery, but you can do it. I know you can if you are given the chance!

  4. I’m angry.
    This doesn’t help you, I know, but I’m saying it anyway.
    I’m told the UK has one of the worse records when it comes to pain control. We have few pain clinics for instance, and pain relief drugs are prescribed less.
    A lot of research shows that addiction is not the huge problem doctors are afraid it is. People like you should not be fighting for the proper pain control that should be given to them as a matter of course.
    You should not be considering amputation until all other avenues have been properly explored. imo they haven’t. This isn’t of course your fault and I completely understand that the prospect of further pain and/or fighting for the drugs you need is simply too much. It just shouldn’t be like this. So yes. I’m angry.
    Is there a pain clinic you can see? Do you think it would be any help?
    Whatever, all I can say is that I care and wish I could do more than rage helplessly at the situation!

    • Hi Sarah,

      Somehow your comment slipped by me this morning. OK, not somehow, the state I was in – rage, depression, despair, agony, I could barely function. Hard to focus even now while I’m waiting for the next breakthrough explosion.

      The scheme manager took over for me, and phoned the surgery to see what the hell wad going on. Long story short – lunchtime she was told the script had been issued and I should have the drugs today. Needless to say, I didn’t get them!

      I’m starting to take this just a tad personally.

      I have no doubt we have the worst record of any first-world country when it comes to pain management – and NICE don’t help. They’ve recently issued a guideline warning of the risk of heart problems associated with taking Paracetamol for OA (which I do). Of course, being NICE, and utterly inept, they don’t offer any alternative. They did something similar with NSAIDs, particularly Naproxen, a couple of years ago.

      I’ve an appointment with a vascular surgeon in three weeks – if I make it that far, without Oramorph I won’t even be able to get out of bed to get there – so no options can be considered until then, and top of this list is a referral to the lymphoedema pain clinic. I missed the last one a couple of weeks ago as that morning I was hauled off to hospital, with a temp of 41C, and wound up in the stroke unit, unconscious for 2 days, and plugged into multiple i-vs – I lost count of all the cannula holes, and so many bruises they looked like Yakuza tattoos! Officially I had pneumonia. I get pneumonia the way most people get colds; whatever this was, it wasn’t pneumonia.

      Anyway, hopefully my meds will turn up tomorrow. If not – well, if not, I have no idea where I go from there.

  5. Oh God Ron

    I’ve been following your blog for a couple of years now and seem to be moving closer towards your issues; now a housebound power wheelie, spoonie and suffer chronic ( unexplained) oedema. Although not lymphoedema, I get fluid overload and lymphorrhea treated by near useless diuretics and loads of dressings. I’ve literally just come back from another 3 week ‘holiday’ courtesy of the NHS. I’ve had iv diuretics and came out 15kg down and my leaky legs stopped too. But like you I’ve been given stupid amounts of lower dose antibiotics over a long time that didn’t work. My legs wouldn’t heal and stank. When I arrived at hospital I got swabbed and had the news I had MRSA. Not surprised. It was everywhere, including open leg wounds. I was lucky, it hadnt gone systemic on me but please take this as a warning and not as an attempt to scaremonger. Insist you get swabbed. Apparently, those of us receiving regular hospital and community care are at a far greater risk of contracting MRSA than Joe Public.

    Please take care, eat plenty of protein, and get well soon

    PS have you tried Ilumi for food. I have been really surprised at how tasty a gluten free ambient meal can be, beats Waitrose hands down!!!

    • Hi Kirsty,

      I already have MRSA – did you miss that post? It’s officially “cured” (yeah, right!), but won’t be swabbed to confirm it until next time I’m admitted to hospital, which seems stupidly short-sighted. I reckon my MRSA arrived courtesy of the district nurses, whose concept of asepsis is sketchy at best.

      I was the first person in this area to use a new – and excellent – dressing, Zetuvit Plus, which stayed leak free for 26 hours, even though, personally, I was leaking like a broken faucet. So – first user, it doesn’t take a genius to realise that, by now, I have the most experience of it, and a couple of weeks ago, although I’m not leaking was much as I was, the dressings quit on me by tea-time the same day.

      So I reported it to the staff nurse (makes Dubbya Bush look like an intellectual giant!), suggesting that the makers were cutting corners. “Oh, no, they wouldn’t do that. No, never!” and so on in the same vein, displaying a terrifying gullibility (of course people do that, all the time, reducing the quality when a product gets established – it’s a quick and easy way to maximise profits!). Good job I didn’t go with my first theory – that we were being sold fakes. She’d have had a stroke.

      I’m due to see the vascular surgeon on October 14. I should have seen him a month ago, but on that day I was dragged out of here unconscious with a temperature of 41C and was lucky to survive. I stayed unconscious through 2 days of i-v antibiotics.

      Officially I had pneumonia but I’m not buying that. I get pneumonia the way other people get flu, and this wasn’t it. My guess, knowing what I know now, is that it was the MRSA staking its claim.

      So, I hope the guy has something to offer, because I’ve had enough of this crap to last me a lifetime.

      Ron.

      Oh – re food: I’ve been making my own ready-meals (Quorn-based, high-protein, plus meat** and fish – I’m not completely veggie), and they’re proving quite successful and far more palatable than shop-bought ones. And now I’ve got my new food processor I can work up a recipe for high-protein bread too. The downside of all this, though, is that high protein inevitably means high calorie too, and there seems to be no way round that. When I was in hospital back in April I was constantly being told to order the high-protein options, which I was doing anyway, but it was a constant argument as to how the hell I could get enough protein when the portions got smaller with every day that passed!

      **Again back in April, we got a rubbish dish called Italian Mince – think cheap mince with some dusty dried basil and a squirt of ketchup. It was worse! But I could see what they were trying to do and, when I got home I made my own. Had some last night, there’s still a couple of portions in the freezer, and now my sense of taste is back to normal it really is excellent, and easy.

      https://ronsrants.wordpress.com/2013/04/30/my-take-on-a-loathed-dish-italian-mince/

      As you can tell, it’s a recipe I wrote and published long before I got around to making it – I tend to do that a lot lately, it gives me something to write about when I’m too ill to cook, and my foodie posts get the most attention these days – and it worked out just fine exactly as written.

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