A blog post of sorts…

OK, not the one I intended, as you’ll see, and a bit rambling, in an attempt to get up to date.

I’ve lived in a small flat, usually close to my monitor screen, for some 17 years and I’ve noticed that, over the years, if I was able to go out, the world would be blurred until my eyes adjusted to a horizon that was more than a few feet away.

On the day I was hauled off to hospital, I was dismayed – way too sick to feel more than that – to find that I was effectively blind out beyond a couple of yards. Just shapes and colours – no detail.

Over the weeks in hospital, with my cheery view of the incinerator plant, hedged about by the most drear winter’s-end landscape you can imagine (think Game of Thrones, without the charm!), my eyes did their thing and refocused.

Back at home, now, and can’t focus on keyboard or screen. Aaaargh!

Luckily I have some (very), modest touch-typing skill, so I’m not entirely incommunicado, but this is just a note to explain why the promised blog posts are slow to appear. That and the fact that I’m finding my release more traumatic than I ever expected – apparently it’s perfectly possible to become institutionalised in six weeks, which is what seems to have happened to me, based on my emotional meltdown on Tuesday afternoon.

Still, I am, at least, resilient and will find my way back on track, hopefully sooner rather than later. Tried explaining this to my new support team without, I fear, too much success.

So little, in fact, that my usual “I have a very narrow window of activity each day if I’m lucky. This varies and imposes its timescale on me NOT vice-versa,” speech, which concludes “which means I have to do things like washing, shaving, etc as and when I AM ABLE. This is not the same as doing them when I want to; not even close.”

Superficially, that looks confrontational – it’s not. It’s simply the conditions under which I have to live, and have had to do so for almost 30 years. I have only a very limited say in the matter, and often no say at all. And there are days – like today – which are simply a dead loss as I am fit for absolutely nothing except, maybe, typing a rambling blog post!

I know that, for a lot of you, I’m preaching to the converted, but I find it disheartening that so many people who work with and around the disabled fail utterly to grasp what being disabled means – we are not being awkward just to make your life difficult!

We are, very many of us,  already comprehensively screwed. This is our burden – please don’t add to it.

However, I find it worryingly satisfying that my newly-acquired “starvation chic” looks really cool in PJ bottoms and a T-shirt!

When I was admitted to APH I’d dropped 25kg from my last recorded weight. 20 of those are still missing (and I’m still losing weight), but, at my current 66.8kg, I am as close to my ideal weight as I’m ever likely to get so I really need to balance my food intake to maintain that and not get fat again.

For the better part of 10 years I averaged – including a weekly pub trip – a kcal intake of around 800 per day (note for body fascists – disability-enforced inactivity makes you fat – screw you if you’re too dense to understand that). Then, last September, I stopped drinking. At a stroke this stripped about  2000kcals from my weekly intake – small wonder that I eventually reached starvation point and almost died (no, boys and girls, that’s not melodrama – I probably had a few days at most left when I finally bit the bullet and got admitted to hospital).

The consensus at APH seems to be that I’m mainly suffering from the effects of very long term and serious illness (and I can’t let that pass without saying that APH has been complicit in denying that over the years), complicated by the fact that several organs are malfunctioning (including my colon, making malabsorption  almost inevitable**). My adrenals aren’t good, and I’m supplementing with hydrocortisone. There’s a Thiamine deficiency, too, that’s being treated, as well as a calcium deficiency which, given my dairy intake, I simply don’t understand.

**The diarrhoea that’s plagued me before and during my APH stay has gone already.

My heart is shot to hell as we know, despite yet another attempt to dial down the severity – FFS the first thing the admitting doc did was call over his junior colleague to listen to classic aortic valve stenosis – mine!  And for much of my stay almost everything wrong with me was ascribed to my heart. Indeed, I was assured that no matter what was done, the result would be the same – I’d die – the only difference being sooner or later.

And I do wish doctors would bear in mind that we have access to the same online data sources they do, and – this might come as a surprise – we are not necessarily any less intelligent than they are.

The day before I was discharged I succumbed to yet another hospital-acquired respiratory infection (my 5th **). Treatment is 100mg Doxycycline daily – half the usual dose even for simple bronchitis. Is it doing anything for my infection? No.

** And a pleural-cavity infection caused by my heart – or possibly not, who the hell knows with all the contradictions and spin? – had to be aspirated about a week earlier. An x-ray showed it to be clear on Tuesday morning, but increasing pain suggests that might have been a tad premature. We’ll see.

And that pretty much brings us up to date as far as the broader picture is concerned.

However, having spent six weeks in hospital trying very hard not to die,  only to emerge into a Kafkaesque police state in which people can simply be disappeared on a whim I have to say it doesn’t seem worth the effort.


18 thoughts on “A blog post of sorts…

  1. welcome back ron.saw your post on johnny void, we,ve got to keep fighting. the struggle continues.

  2. Hi Ron,
    So pleased that you’re back home and not a ‘corner person’ any more!
    Love and hugs, Ricia.

    • D3 levels are fine. I supplement at home and – to my surprise – the hospital supplemented with D3 too, not the crappy D that NICE prefers cos it’s a millionth of a penny cheaper!

      Where it did fall to pieces is with Vitamin C – left hospital with early signs of scurvy. Got it on the run now – luckily it’s easily treated – but there seems to be nothing in place to provide vitamin C and, if you take your own, it’s likely to be taken off you by staff.

      In future I’ll take stuff like this in and keep it hidden.

      • Good to ‘see’ you home Ron. Missed you. Do you really think you could hide anything from ward sister??!!
        Pat x

        • Yep! I successfully hid my stash of Co-codamol, brought in once I realised how erratic pain management was going to be.


  3. Thanks to the ‘ME related malabsorption in the gut problems’ my GP has put me on the D3’s too, do you find the tablets better than the capsuls? The reason I ask is that the chemist is having problems getting hold of the tablets (Aciferol) and has asked me to ask my GP to swap them.
    Cheers, Ricia.

    • Only ever taken the tablet form (I buy my own), and as far as I know there’s no shortage. However, D3 is D3 so I see no reason to anticipate problems with an alternate delivery system like a capsule. My advice would be to make doubly sure you actually get D3, and see how it works out.

      Keep notes if it helps.


    • The infection seems to be winning right now if pain is any indicator. I’ll double the dose from tomorrow and if that doesn’t work I always have Amoxyl to fall back on.

  4. This is my first time reading your blog and you’re an amazing writer! I admire your strength and courage, and you sharing your story and “rants” with everyone is simply amazing! Thank you for sharing!!!!

    • My pleasure – I feel very strongly that information has little value if not shared – always good to meet a new fan.


  5. Glad to hear your home Ron…. Think many of us would be hiding pain relief if it can’t be given regularly….. just the thought of been with-out is enough to cause a cold sweat !! x

  6. Ron, I am so delighted to get your post, I still just can’t get myself around this twitter thing…..I used to know my way around my computer…..

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