Warning – contains ulcer photos some of you will find gross.
Yesterday – the first for several years – was a day in which pain featured only peripherally, due in no small part to the increase in medication enforced by the vascular surgeon.
That increase – which took an unforgiveable three weeks to get to me via my GP – was immediately followed by an attempt by him to stop my supply of Oramorph. I got it reinstated after dishing out a bollocking that surprised even me, during which he complained that I don’t keep him informed enough – a charge that’s only partly true.
I don’t keep him informed – that’s true. The reasons why are perfectly valid though – he never replies to letters, and he doesn’t understand my needs or accept how I address them. You could argue that I should try to make him understand – I HAVE been trying – for 20 years! He has always been positively terrified of analgesia – if he had his way I’d get nothing stronger than Paracetamol. He was, perversely, responsible for giving me morphine, since when he’s done his level best to stop me taking the only analgesic that’s ever worked.
I decided that my best course was to avoid him except for emergencies, and take care of myself which, until overwhelmed by the events of this year and last, I’ve done very successfully.
When I discovered I had Addison’s Disease earlier this year, I also discovered – he told me, but accepted no responsibility – that he’d missed it in my hospital discharge notes. Over a year had elapsed, at that point, since the actual diagnosis (which had been withheld from me), a year in which I could very easily have died as a result of being kept in the dark.
Anyway, while I was coming to terms with Addie’s I discovered that I was expected to keep my GP informed of any changes to my condition and/or treatment (Addie’s patients are expected to self-medicate to maintain their stability), so I wrote, telling him of this, and asking him how much detail he wanted and at what sort of interval.
I recorded my weight and steroid consumption daily, in monthly blocks so it made sense to copy each completed month to him.
I have, since August and the development of potentially fatal attacks of pulmonary oedema, and worsening heart problems (the two go hand in hand), expanded the data to include any respiratory events, blood pressure and O2 Sats. All vital information for anyone monitoring my health – I’m still waiting for a reply 8 months on!
The other reason he’s out of the loop is the failure – or rather cock-up – of the telemedicine trial. There were two vital prerequisites for this – the patients must have an in-depth knowledge of their condition(s) and be able to communicate effectively and with precision “Er, I’ve gorra pain in me back, like,” really won’t hack it when you’re at the other end of a webcam or email link. And they needed to be tech savvy, too, and have the necessary computer and peripherals.
They would also need, I should think, monitoring equipment appropriate to what ails them – I have an electronic PF/FEV1 meter, a clinically-validated (i.e. accurate), blood pressure monitor and a pulse oximeter to measure my O2 levels. As far as I can tell, participants weren’t selected on those criteria (no idea about equipment), and so it all turned to ashes.
All I need to make it work for me is an email address for my GP – he can have all the information he wants, as finely detailed – or not – as he needs. But there’s a problem. Patients are prohibited from using email.
How bloody stupid is that? He can email me – I can’t reply.
OK, I accept that it’s not feasible to give every patient their GP’s email address, they’d never get any work done, but in my case, I’m housebound, I don’t function well on the phone or even face to face (this is why), so if he wants me to keep him in the loop, I need email access at the very least. Personally, I think all housebound patients who are also high-risk should have email access to their GP.
If I’m ill, for example, I need one of two things – immediate hospitalisation (if it’s anything to do with my heart, including severe pulmonary oedema, as happened in August), or a robust course of antibiotics, with nebulised steroids and bronchodilators in support if it’s a COPD-related problem or less severe pulmonary oedema, either of which I can deal with myself.
I’ve asked for the drugs, plus emergency oxygen. As ever, I’m still waiting for a reply.
Enter, then, the vascular surgeon.
His immediate concern was that my pain was out of control. I was told, last year, by a fellow-sufferer, that the pain of lymphoedema is the worst anyone can experience. I believed it then, but they were wrong – my ulcer is easily an order of magnitude worse.
My ulcer is the size of my hand, and populated by a myriad exposed nerves – it is pure, unadulterated agony, and it never stops. It’s so big now I have to take two photos to record it all:-
NB: The black areas are nothing sinister – just oxidised silver from the dressings. What IS sinister is the rate at which it’s spreading. I estimate it will encircle my leg by the end of the year and what will happen then no-one seems to know. It’ll be nothing good, that’s for sure.
Even with 280mg of morphine daily, from Zomorph and Oramorph –
THE. PAIN. NEVER. STOPS.
Breakthrough pain, as it’s normally described, doesn’t happen for me – there is no break-through of severe pain from pain-free because my pain has never been controlled – I have severe pain and I have extremely severe pain for which I need Oramorph (it doesn’t stop it, but it does blunt the worst of it a little).
I realise it’s early days, and that other factors (like a course of antibiotics), might be at work, but yesterday was the first almost pain-free day I can remember in years.
Don’t get me wrong, I still hurt, but nowhere near as badly, and with only one dose of Oramorph when I got up (the worst part of the day when the fluid that has drained from my leg overnight tries to return**). I took a further dose at bedtime as that always wakes up the pain gremlins and, true to form, it did. The pain was very much less severe, though, and I slept well.
**That’s my theory, at least, and no-one has come up with a better one.
I am not reporting this to my GP – he’ll simply try to stop my Oramorph again and it’s still needed. However, if the improvement is maintained it will do what the surgeon anticipated – reduce my dependence upon Oramorph.
A couple more points.
My GP is trying to tell me that getting my pain under control is an alternative to surgery. No, it bloody isn’t because I can’t trust him not to fuck with it. The agreement with the surgeon was that this is to get my pain under control prior to surgery, not instead of it.
And my GP keeps telling me I’m taking a massive dose of morphine. I’m not. I mean, does he think I can’t read? Doctors forget that we can now access the same data they can and, speaking for myself, understand it (medicine has been a hobby all my adult life – it is for many chronically sick people).I keep telling him this, and yet he continues to try to bullshit me. And he wonders why I don’t talk to him!
What I’m taking is close to mid-range – 100mg Zomorph b.d. plus, currently, 10ml Oramorph up to 4 times daily. (10ml = 20mg of morphine) – I have a long way to go before the potential of morphine is maxed out. I know people with similar conditions as me who are taking very much more, especially Oramorph.
So that’s where things are for now. Yesterday was very good. Today, with the same 100mg of Zomorph and 10ml of Oramorph in my system, is not so good. That could be because I was on my feet a lot yesterday, or could just be Sod’s Law but, for now, I’m keeping my own council. When I have been stable, with my pain well-controlled for at least 2 weeks I’ll consider that genuine progress.
For now, though, one good day is just a blip, albeit a very welcome one.