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This is me – right here, right now…

Posted Apr 27 2013 10:21am

In the post Ethics? Ha! (April 13), I detailed how I was offered a deal – stay off Twitter and get the best care available, or continue to piss people off (i.e. tell the truth about APH), and well, not get the best available care.

So yes, briefly I sold out, before coming to my senses, withdrawing my consent to invasive testing, and threatening to discharge myself.

Anyway, a large part of the initial conversation was the doc explaining in detail what was wrong with me (way too much), and my chances of survival (way too little). Whatever choices I made, whatever road we ultimately went down, I was still going to die. That was his view then and I never heard a contrary opinion from him on that subject.

The cumulative conditions – well-established and newly discovered, the latter a mixed bag of organ malfunction, deficiency conditions and drug toxicities – can be treated, but not cured. For example, reducing Phyllocontin to the point where it loses its toxicity also reduces its efficacy to close to zero. This will not aid my ability to breathe!

So OK – I’m dying. I knew this before I was ambushed and, indeed, have survived longer than I ever expected to, having suffered from life-threatening illness since age 2, and sneaked my way past several predicted end-points to still be here at 68.

I don’t doubt that there are people out there who will view my impending ** demise with less equanimity than I, and I regret that, but I’ve been fighting this battle for so long – since even before I knew I had a battle to fight – what does a 2-year-old really know of a brush with death, or months of measles-induced blindness? – I’m feeling pretty damn used up right now.

** Just how “impending” no-one is saying – all I can tell you is that sometimes, now,  I doubt my ability to make it as far as my next breath. So far, pretty obviously, I have.

Let me stress, though, that I am not simply going to quit (nor end things myself), but the coming weeks are going to be critical, certainly from a psychological perspective as I’ve been worryingly close to tipping over into a breakdown on a couple of occasions (and might actually have done so without realising at the time).

I will not, then, be rushed. I shall progress at my own pace (which is improving – I’ve done more today than yesterday, and more yesterday that the day before). I’ll get there.

How long I remain there is anyone’s guess – I promise it’ll get my best shot.

But back to APH, and I was assessed twice by physios. The first time I was walked the length of two beds, slowly and painfully, and pronounced perfectly fine (if I’d had to crawl on my hands and knees those useless fucks would have said the same thing!).

Anyway, someone disagreed with them as a couple of weeks later they were sent back – with poor grace – to try again. Slightly longer walk, during which they were snarled at for being loud and patronising.

Guys, I lived on that ward, it was home for 6 weeks, there was no need for you  to point up the presence of walls and doors, or people, or trolleys – hazards I managed to navigate up to 50 times or more a day** without your  “help”. Grow the fuck up and learn to treat people with respect!

Same result!

** On my insanely frequent, round-the-clock trips to the toilet to indulge my new double incontinence skills!

I was asked, though, to grade my pain on – you’ll love this! – a scale of 1 to 3. WTF?

On a scale of 1 to 10 most days it’s off the damn scale, and that’s with my meds maxed out. I rather suspect I told them not to be bloody stupid. (Psst! Yep, I know it doesn’t matter what the scale is in real terms, but people’s perception of it does, and 1 to 3 is risible in the minds of most people.)

I have, at the moment, my 5th hospital-acquired respiratory infection. It is being “treated” with Doxycycline at half the dose needed for common bronchitis and, needless to say, it’s not working, and my lungs are flooding, as I type, with toxic crap – time to self-medicate. There’s a surprise!

Hmm… The swelling in my legs has gone down perceptibly since I got home, and it’s just occurred to me that the reason for this might be the absence of hot drinks, which come round half a dozen times a day in hospital.

Most had tea or coffee, but I had Bovril until I’d exhausted the supply, then switched to soup, and I can’t help wondering how wise it was for someone with severe peripheral oedema to be chugging about a litre of salty liquid every single day.

Don’t get me wrong – I enjoyed it. It broke up the day exactly as it was intended to do – maximum customer satisfaction at a low cost** – I just don’t think it was suitable for me.

**It also allowed me to have breakfast, as I could dunk the execrable rubber toast! Really, guys, if you fuck up toast so badly, you ARE in the wrong job.

Doctors, nurses, physio, OT, CT scan crew, all commented on how huge my legs and feet were – no-one ever asked how much, and what, I was drinking. The question has only just occurred to me as I made my second Bovril of the day. I think, though, that the expectation that this question should occur to staff  rather more than it does to patients isn’t unreasonable.

And I’m restricting myself to just a couple of 300ml mugs a day, since you ask! By the way, if anyone knows a source of 300ml china mugs, please share (most mugs are 400ml or more and heavy earthenware). I have just one, rescued from a box of old crockery that was being binned, and I find it the perfect size for a hot drink. Plus, for a wobbly spoonie, the lightweight china means it’s not too heavy when full.

Finally, I usually claim to be 67. I am, in fact, as was brought home to me at APH, actually 68. That birthday fell during the period last year when I was beginning my slide into the darkness, and failed utterly to register.


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