Chronicles of the Heart, Part 56…

Well, I thought I was done with Chronicles, as the last instalment was almost a year ago, but it appears my body has other ideas.

What follows, then, is a cautionary tale for those of you who might be have a similar combination of extreme pain, respiratory malfunction and a dodgy heart. If you need morphine, lungs and heart might well preclude the effective treatment of the pain.

For some months now I’ve been having fairly severe asthma attacks (severe enough to make me question my long-term survival). This past week, though, I have had two attacks that made me wonder if I’d survive the night (they never happen during the day for some reason, and 4 in the morning, whether one has a Famous Blue Raincoat or not, is a bad time to be in A&E), and it’s the effect they have on my heart that’s prompted me to write this.

I might be wrong – I hope I am – but I have an inescapable feeling I might not have much longer. I sure as hell won’t if these attacks continue, especially if they continue to increase in severity.

Something new since last time; during my stay in APH this time last year, I developed (or was found to have, and had it for a while – no-one’s discussed it with me so I don’t know), Addison’s Disease. Treated at the time with high levels of oral hydrocortisone, since then on a maintenance dose of 30mg a day, but there has been no follow-up, no monitoring of my condition, no attempt to find out if cortisol is the only hormone I’m not producing (I’ve lost all my body hair so I’m guessing I might be short of others, too).

Yesterday I reduced my morphine by 40mg and eliminated Ibuprofen, both prime suspects for triggering the asthma attacks, and increased my hydrocortisone (for Addison’s) by 20mg – standard advice during a crisis.

Clearly some combination of those worked, though my heart, this morning, is incredibly erratic (so I’ve reinstated my potassium supplement, which is, apparently, contra-indicated in Addison’s but keeps my heart stable).

I have wondered, insofar as I was capable of rational thought during the attacks, if the problem was actually my heart, not my lungs (though during my only coronary – and I’d like to keep it that way – my breathing was unaffected).

I also have constant chest pain, left of centre. Feels like it wants to be angina but, as yet, it’s neither severe not radiating – it’s just there.

Anyway, the thing with COPD is that morphine can cause respiratory suppression which, in my case, appears to have manifested itself as extremely severe asthma attacks – so severe as to preclude calling an ambulance as I can’t speak. In addition – and this is the reason for this post – it seriously affects my heart and, I have no doubt, will kill me if the attacks continue. Hell, the simple inability to adequately breathe in could do that too.

The only way to tackle these attacks is to take my spacer and inhalers to bed and just keep on pumping in Salbutamol, steroids and Salmeterol on every tiny in-breath until I can breathe more or less normally again – which takes about 2 hours which is also about the same time an ambulance will take to arrive, based on past experience.

What I need is Salbutamol nebules for my nebuliser. These used to be on my repeat meds list, but the surgery staff were so stupid that if I ordered inhalers, I got nebules, and if I asked for nebules, I got nebules – I wound up with more Salbutamol nebules than the pharmacy! Even putting nebules and inhalers at different ends of the list had no effect.

So I decided to talk to the practise manager who – clearly as dumb as her staff – decided that it was, by some obscure alchemy, all my fault. Yep, my fault that some numpty is too incompetent to copy data from my list to their computer – it’s a check-box exercise, ffs!

So I gave up, especially as nebules didn’t do a great deal for me, never have, but I’m sure, in my present circumstances, they could help, so I need to get them reinstated.

I also need a GTN spray, just in case.

So, to try and tie up this unfortunately rambling narrative neatly (I’m having a very bad day, emotionally as well as physically), my morphine was increased recently from 60mg of Zomorph every 12 hours to 70mg, and that’s when the nocturnal asthma attacks went from worrying to terrifying.

I tend to treat Oramorph rather cavalierly. The senior partner at the GP practise told me not to bugger about with tiny doses, but take what it needs to shut down the pain. If you’ve never experienced the pain of lymphoedema that might strike you as reckless. Trust me, it’s not, and  at times it’s taken 30ml to get my pain back under control. By which I don’t mean gone, just reduced to the point where suicide no longer seems like the only escape.

My “official” GP, though, fondly believes that 5ml of Oramorph is enough.** It isn’t. 5ml does absolutely nothing, as I’ve told him until I’m sick of telling him. 10ml is the minimum effective dose, and that’s what I take. Not every day, just when I need it.

**His concern is that it could cause respiratory suppression, and kill me in my sleep (what bloody sleep?). The events of this past week suggest he might be right. Trouble is, he has always been reluctant to prescribe effective analgesia, so I simply assumed the “it’ll kill you” was just more bullshit, but maybe not but, Doc, maybe you shouldn’t cry wolf so fucking often?

Last night, desperately worried about my prospects of surviving another attack, I scaled back my morphine. I’d already taken my morning dose of Zomorph (70mg), so I reduced my evening dose to 30mg, and took no further Oramorph after my morning 10ml.

In addition, at bedtime, I take 2 Paracetamol and 1 Ibuprofen tabs. Before the current crisis I’d suspected Ibuprofen of triggering the milder attacks, so last night I omitted that, too.

And to give my system a boost, I added another 20mg of hydrocortisone to stave off an Addisonian crisis.

Something in there worked, as I slept like a baby – a very worried baby, admittedly, but at least I slept.

This morning I took 60mg of Zomorph – it wasn’t enough, even with a 10ml shot of Oramorph so I think the approach needs to be the full amount in the morning, no Oramorph after early evening (it has a short half-life), and 30mg of Zomorph at 17.00. At bedtime, two Paracetamol – inadequate, but safe, though if not having asthma attacks is going to mean a lot more pain, as it is at the moment, we need to look at alternative analgesia that won’t cause these problems..

A side effect of all this shit is that I am absolutely terrified, and almost terminally depressed – hardly half an hour goes by without my thinking of killing myself, because I can see no other way out. And as I’ve explained before, I can’t take antidepressants, the side effects are too severe and, in the case of SSRIs, positively dangerous.

To give you some slight idea of how unutterably grim things have become, I saw this photo on Twitter a few days ago – and just sat here and cried. For hours:-

Kitten-Box Click to view full size, Back button to return.

It’s true to say I’m in love , and that’s all, right now, that’s staying my hand (I have a suicide kit that will take me off beyond all hope of unwanted revival), as I have no desire to hurt anyone else by my actions. And not just the person here who, I think, doesn’t even know how I feel about her, as there’d be no point in telling her.** We’re friends, and that’s as far as it’s going. And there are those on Twitter who keep an eye on me, and worry about me, whom I also have no desire to hurt.

**Especially as it would look like blackmail – love me or I’ll kill myself. And that is NOT what I’m saying, so let’s have that clear, right now. I would NEVER say that, or have it misunderstood in that way.

I don’t know how long this state of affairs will hold – the Dog is bigger and blacker than a Tar Pit Dire Wolf and, sooner rather than later, I feel, will overwhelm me.

And, you know, sitting here listening to Leonard Cohen is doing me no fucking good at all! Let’s have some Mary Chapin Carpenter.

And now, folks, I’m going to do something some of you think is really strange – I’m going to hit the kitchen and make a batch of slow-fermented bread. First, though, I have to write up the recipe, as much for my own benefit as anyone else’s as my brain is turning to mush. Seriously, I feel as if I’m sliding into some form of dementia. I felt like this a few years ago, and it slowly faded, but it’s staged a comeback and, even working from my own recipes, I tend to fuck things up and, Christ, it’s getting me down.

I often cook or bake, or just write recipes, when at my lowest ebb – it’s a displacement activity which needs me to focus outwards, while writing this, for example, forces me inwards, to – right now – my considerable detriment.

The theory behind slow-fermented bread (fermented for a day or two in the fridge), is that it develops a much better flavour** than normal bread. And I have a batch of Canadian flour with a stronger than normal protein structure which, allegedly, is perfect for the job.

**My worry is that it will taste strongly of yeast, which is not what I want in bread – it should taste of the grains, primarily, in this case 50/50 organic strong white flour, and the same flour in wholemeal form.

We’ll see…

11 thoughts on “Chronicles of the Heart, Part 56…

  1. (((Ron))) I wish I could give you real hugs my friend. Take gentle care, and when the tears come, let them flow as much as they need to. xx

  2. Dear Ron
    You don’t know much of us in person but we feel we know you from your blog and twitter.
    I think you are wonderfully brave to share such honesty and insight about us. We are here as your supporters. Please lean on us and let us support you at the moment


    • Hi Kirsty,

      I do know some quite well, but the degree of support from everyone, even relative strangers, hell, even complete strangers from time to time, never ceases to amaze, and gratify, me.

      I don’t always agree with the perception of me – but I’ve learned not to argue about it, I’m outnumbered! From my perspective I’m just doing what I can to get by, and publishing it here in the hope that my experience might, ultimately, benefit others or, at least, help them understand that others are going through what they’re going through, and they’re not alone.

      And sometimes, admittedly, I just need to vent!


  3. sorry your feeling so low Ron. understandable as it is. often wonder why some get so much thrown at them while others live their life full and free from medical and other types of problems (or so it would seem on the one knows what goes on beyond/inside their doors or even behind their often smiling faces within their brain or body.) You do inspire others though and have just given me a way to try and stop myself falling into the “feeling sorry for myself pit” or actual “pit of depression.” (or as John Bunyan called it.. the pit of despair.) that way is diversion… most of the time its difficult to even think of doing anything . The whole thing that upsets us takes over and last thing we can even think of is doing something to take our minds of our problems. some problems eventually ease or go away altogether.others, like yours, are there to stay with little or no respite. compared to you i am fit,in spite of all the different (almost 30 now) conditions i am told ive got. maybe i should concentrate on making greetings cards….or find something else to do. ill have a think. Thanks for that. hoping for some respite for you and maybe new painkillers. like you i am restricted to what pain killers i can take,. Ibubrofen is one i cant as it does affect my breathing. take care.

  4. Ron I do understand what your saying there. i keep getting told by one of my kids to lighten up but i cant because like you i dont feel im getting the understanding i feel i need from my nearest and dearest. one says she listens but cant be doing as she constantly goes off into her problems while im trying to tell her one of mine problems ive heard countless times. some not even a problem. just constantly sitting n telling me what money shes got coming in, what she has to pay out etc. (I know it all practically by heart now) or about the saga of her and her partners fight to get a bungalow since his amputation. theyve been apart 9 months. and while i feel for them and ive tried to help them get help with all their needs and succeeded , whereas i cant get nothing for myself, she just wants to bleed me dry. i keep losing my temper over the slightest thing. specially with her. (not good for the old BP i know ) same with my daughter, seeing slights where there are none intended.being told its only borderline.your not getting worse (when on about one or other of the many conditions i have…most are progressive or degenerative so i know they are going to get worse.) she however knows better n as far as shes concerned ive stopped smoking so i wont get worse.itll slow it down admitted but not stop the COPD altogether.for instance. diabetes usually gets worse. at least from pre or borderline to type 2 proper.but as far as shes concerned i dont have it even though docs say i do. she refuses to accept im not the mum i was at 43. so yes,i can appreciate everything you say.its like you are mirroring my do you cope with it? (not meaning how do YOU cope with it but how does ANYONE cope with it.)we cant be the only ones feeling like this..

    • I’ve deleted the post you’re replying to – I was angry and it was inappropriate.

      But in answer to the question you didn’t ask, I cope with it extremely badly – I think I might have just lost the only good thing in my life. And if you read this, Fi, yes, I do mean you.

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