The status quo cannot be maintained…

Trigger warning: Mentions suicide. A View from Bed 3 post.

Everything changes next Tuesday when I’ll finally have room to use my wheelchair indoors. The pain won’t end as I still won’t be able to use it 100% of the time, but it’ll be greatly reduced (based on a trial last week).

And I told my original nurse, on Monday (not seen her for a week), that amputation, when, hopefully, the pain will end, might finally be a reality. Instead of being pleased for me, she got quite uppity and obstructive about it!

I really don’t understand that. She’s been coming here since about May last year. She knows how hideous the pain was throughout 2013, how I almost died, twice, how I was told it was the worst pain that I would ever experience and, yet, despite that, how very much worse it is now than then.

I wanted amputation last year, but no-one would even talk to me about it, so fuck her if she doesn’t like it. If I get the chance to end this horror, I’m going to grab it with both hands.

As I’ve said, I doubt surgery will actually happen as I’d likely not survive it, but if it all falls through, if I can’t even get better drugs (my fallback position), then I’ll end it myself.

This morning, I overslept and my meds, including my first dose of morphine, were 2 hours late, and until a large dose of Oramorph** kicked in I was in absolute, merciless, fucking agony. It’s not a whole lot better now; it rarely is. I cannot, I will not, continue to live like this a minute longer than I have to.

 

**What unwanted effects taking Oramorph (morphine solution) and Zomorph (modified-release morphine), together will have I have no idea – there’s normally 2 or 3 hours between them. Right now I don’t care – the pain has to stop.

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6 thoughts on “The status quo cannot be maintained…

  1. Oh Ron I hope you’re alright as you can be its come to a point where they MUST listen to you the patient, the ones who knows the excruciating pain you’re are having to deal with 24 hrs a day and get better pain medication sorted its just not good enough NHS/Gp/nurses get your act together and QUICKLEY.

  2. Ron, you have always explained your own nightmare so vividly and I cannot understand how the medical personnel around you are not doing everything they can to work together to help you. I know you are very good at communicating but if there is ever anything that you think your friends online can do, then please ask. I wish my own patient involvement extended across the country to your CCG. You are surely in the hearts and minds of your online friends and whilst this gives important support, it’s not a substitute for proper, effective pain relief, which should be a basic right to everyone who needs it in this country! As for the combined dose of morphine & oramorph, I expect you’ll be sleepy. That’s what I’ve experienced in the past but hopefully you’ll be getting a decent dose of pain relief for a while.

    • I’m at a loss too. Take the cardiologist I saw a few weeks ago. I knew he’d ask why I was in a wheelchair and, so we wouldn’t get sidetracked, I put everything in writing for him to read later, explaining why in detail. His interpretation? “He feels a bit weak”!

      The same guy, 18 years ago, refused to accept that I had COPD, despite the ink being barely dry on the diagnosis. Now, COPD, he says, is the cause of ALL my problems (which is garbage), and denies I have heart failure, despite the fact I recently spent a week on the heart ward, where it was explained in detail that I have both left and right-side heart failure.

      Last year I had my right lung aspirated, to remove fluid build-up caused by – oh damn, you guessed – heart failure. For the last three years I’ve been told, categorically, I have heart failure – now this numpty says I don’t. Hell, I live with it – I’m in no doubt at all. And at the same time COPD was diagnosed, so was Cor Pulmonale – right-side heart failure. If I had it then, I have it now – it doesn’t go away.

      All this fuckuppery, though, goes way beyond simple incompetence – I’m starting to take it just a bit personally.

    • Oh, I know damn well it’s personal – I just don’t know why. Or even how.

      The only thing I can think of is that it’s payback by the hospital for blogging and tweeting about their unending cock-ups, and telling them to bugger off when they tried to make me take them down.

      For that to be true I’d have to believe that a lot of people are involved, people with no reason to become involved, and that way madness lies.

      When the Heart Failure nurse said she’d make me an appointment with a doctor, I told her I didn’t want to see the woman I saw last time – a GP with a “special interest” in cardiology as she was an idiot – I wanted a consultant or nobody. Within minutes she was arguing against heart failure.

      Coincidence? I seriously doubt it.

  3. well i seem to have a similar thing going on here.though not as serious as yours… 7 years ago after a 6 day stay in hospital with suspected heart attack was told i hadn’t had one.no scarring on heart etc. now I’m being shown letters which, so I’m told, show that i did have one and my heart scan was not a good one therefore not conclusive that i didn’t have one.what to believe??oh and apparently i had had chest pain (not that i remember and i am sure i would remember THAT.what is it with Dr’s these days?

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