Lucky? Not so you’d notice . . .

This morning, and throughout the day. I could barely stand or walk, couldn’t see properly, there is not a joint, or muscle group that doesn’t hurt and/or is swollen (in the case of my hip joints it’s both), and it’s been bloody hard to breathe, too; I couldn’t even use the phone, because I can’t breathe well enough to talk. This has been a perfectly normal Friday.

Because Thursday is the day I go to the pub. Though, to be honest, it’s not hugely different to most other days.

I was told, yesterday, I’m one of the lucky ones. I’m afraid I responded rather snarkily (sorry, fizzi), to the effect that the bill would fall due today – as it always does. And has. In spades.

I don’t feel particularly lucky.

True, there are some people who can’t get out at all and, to be honest, if I played by the rules, I should be one of them.

I can’t walk worth a damn, and every step – hell, everything I do –  is excruciatingly painful. And it’s years, for example, since I’ve been able to take care of myself properly but, as there’s no help to be had, I have to make the best of it that I can. Nor am I able to clean my flat, and there’s no help there, either, so mostly it doesn’t get done. Long since stopped worrying about that. Except, of course, the parts that absolutely have to be kept clean, like the bathroom and kitchen.

And I sure as hell shouldn’t drink, but of all the things I used to enjoy, when I was well, or less ill, at least – I’ve never actually been well – that’s all that’s left to me, and I doubt that’s going to last much longer.  I either stop or it’ll kill me – either way, I lose.

I can’t even drive now, either – I’m too weak, and the ever-present nausea is too distracting.

The only way I can go out on Thursday, other than simply forcing myself to do so, is by keeping physical activity as low as possible, husbanding my resources, for the rest of the week when, outside of my flat, I’m a power wheelie (I would be inside too, if I had the room). Even then it can take 4 hours to get ready, most of that being rest breaks.

Cooking, for the most part, is a thing of the past, and on the rare occasion I’m able to, I mostly cook stews and casseroles for the freezer, or cook a joint of meat in the slow cooker, portion it with gravy, made with the cooking liquor, and freeze it – thus getting the maximum return for the effort. Cooking from scratch on a daily basis simply hasn’t been a possibility for years – peeling veggies, for example, is inordinately painful, so I’d much rather do it for a dish that will yield half a dozen meals, than just for one.

Those are also the times when I try out new techniques, like making sausages and, the next time I’m able it’ll be morcilla – Spanish black pudding, made with rice and fried onions, hopefully in the next few days. Just occasionally , learning new stuff gives me the illusion that I have a future.

I sleep on the couch, sitting up at night, and sit here, at my computer, during the day. That, with occasional excursions to the kitchen to take my meds or, thanks to my diuretics, 3 times an hour to the bathroom, is as exciting as it gets. (And sitting for most of 24 hours out of 24 gets quite remarkably painful – I’d kill to be able to lie down.)

Recently I had to cancel a string of cardio appointments, because my being there early for most of them, and two days in succession for a couple, simply wasn’t going to happen. There were other reasons, too, which I’ve covered elsewhere, but the basic reason was because it wasn’t possible – I’m simply too ill. And that’s something the system takes no account of – if you’re not an in-patient, you’re expected to turn up at their behest – nobody asks if it’s convenient, or even possible.

It’s worth mentioning that I’ve heard nothing from either the cardiologist or my GP – I expected a letter from the former, at least, telling me I was being foolish, or berating me for wasting his time which, for me, rather confirms my view that the tests were more for his benefit than mine – I was just a research project.

In addition – what? I don’t know – I was distracted and now I’ve forgotten, because my short-term  memory is shot to hell. I can remember in minute detail routes I walked 30-odd years ago, but I can’t recall a conversation seconds after it’s finished or, indeed, during it. Or, indeed, what I was going to type instead of that.

So no, I’m sorry, but I don’t feel lucky, not in the slightest, especially after the life-threatening events of the past year or so.

The only reason I’m still here, I’m pretty sure, is because I’m too bloody-minded not to be.

It would be so very, very, easy to say, Enough! and just step out of the world.

I can’t do that, though. Partly because I’m too goddamned stubborn, and continue to believe that tomorrow, or the next day, might just be better – and occasionally it has been – but mainly because it would upset too many people.

That is what keeps me going – not being lucky.

And for new readers, this is why I’m in such a parlous state:-

Severe asthma and bronchiectasis since age 2, leading to

COPD since 1996. COPD indicates the addition of emphysema to the mix; of course, I still have the above precursors too – they don’t go away.

In 1983 I was struck by lightning, which did a huge amount of damage, wrecking my feet, damaging most of my joints, and leaving me with a catastrophic catalogue of problems – see this post for details.

In 1995, 10 years after becoming ill, I was finally diagnosed with ME. However, I have recently come to believe that the lightning strike is responsible, and I might not have ME at all. Or it might be both.

I have had osteoarthritis in my left hip since the age of 32. Currently both hips are badly affected, as are most joints in varying degrees, particularly my hands – I think the fact it’s so widespread is directly attributable to the lightning strike, though, obviously, there was a pre-existing tendency.

In January last year I was diagnosed with heart failure, which an incompetent consultant omitted to record, and it took me just two weeks short of a year to get it independently confirmed by a consultant cardiologist.

In the meantime, in May last year, an echocardiogram showed I had calcification of the aortic valve (the outlet from the heart), with the inevitable narrowing of the valve opening (stenosis).

While serious, neither condition, on its own, is cause for much concern. Together, and with my symptom set, they are potentially fatal, the 2-year survival rate being 50% and I’m into my second year, after which, presumably, the odds shorten, assuming I don’t become one of the unlucky 50%.

It would also be extremely easy to take to my bed, and sometimes the temptation is almost overwhelming. I would certainly hurt less, and the fact that my breathing is severely impaired would matter less too, but to do so would be massively destructive and would be the point of no return – I’m already profoundly weak and would only get weaker – even if I had someone to look after me, which I don’t.

Which is why, even though I drive myself to go out once a week, you’ll have to excuse me if I view the idea that I’m lucky with a somewhat jaundiced eye.

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3 thoughts on “Lucky? Not so you’d notice . . .

  1. My God, Ron, what a heart-wrenching situation you seem to have been in most of your life. And yet, not once during reading did I think that you feel sorry for yourself or are rallying for any kind of pity; quite the opposite, actually. One thing, at least… you’re as sharp as a tack. I’ve just also read your ‘Ed Milliband’ post.

    If WordPress and Google Blogger play nice with each other then I’m going to follow this Blog (I’m new to Blogging so still getting to grips with how everything work).

    And don’t you be going anywhere, Mr – you have a voice that we NEED !

    Kindest regards.

    • Thanks for that.

      And as you’re a newbie, I’ve written a lot of stuff about writing for blogs that you might find useful – it’s a skill not many miles away from short-story writing (at which, perversely, I have no skill whatsoever!). The best links are here
      https://ronsrants.wordpress.com/2010/03/02/some-thoughts-on-writing-for-blogs%E2%80%A6/ You can find more by searching for writing or blogging (search box at top of sidebar. Try language too. The search applet isn’t great, so you’ll get some rubbish as well as what you want.

      Some bloggers get obsessed with SOE – Search Engine Optimisation. I’ve never bothered beyond the basics, I’ve assumed that if I write what people want to read, they’ll come, and that’s worked out pretty well (though oddly enough, over the past 14 months it seems what people have most wanted to read about has been me – I fully expected to lose readers, but the opposite happened. Hits went through the roof, subscriptions doubled, as did Twitter followers. Go figure. And only a few years ago I was writing about how much of a waste of time Twitter was! It can, by the way, be a good source of material, too. Some people retweet every damn thing they come across, but every so often they turn up a gem, like the Atos post a few days ago. The person that tweeted the link has several blogs but didn’t run with it – I did, and it paid off.

      Twitter can be a good place to brush up typing skills, too, especially if you’re in a six-way conversation!

      Don’t try to be all things to all people – it never works. It’s impossible to write so as to please people you don’t know, so write to please the person you know best – you.

      And always pay attention to spelling and punctuation. The latter has had a bad press of late, but it gives vital structure to the language – even the humble comma, misplaced, can change meaning totally.

      If you want a target to aim for, scroll down to the very bottom of the sidebar, and click on the map there – that’s my “world domination” map 😉 – the world-wide coverage of my blog.** That’s about 2 year’s worth (I used a different mapping service previously, this one’s better as the old one would reset to zero periodically, and all my data would be lost), and my blog will be 4 years old on the 15th. My first month I got 43 hits – the last four months I’ve had between 21,000 and 27,000 a month (and wasn’t paying attention when I passed the half-million mark, and missed it).

      **I often wonder who the hell is reading my stuff in some of the more remote areas, where English speakers are probably thin on the ground. There’s a clutch of islands just north-west of Australia – that area seems to have spread outwards from Vanuatu, the island state, on the edge of the map, where I buy some of my meds. And there’s one person in Churchill, on Hudson Bay, who moves north in the summer and drops off the map, and returns in the autumn, popping up along the Seal River, before settling in Churchill again, plus some lonely soul in the centre of China, miles from anywhere. I’d love to know who those people are, and what the attraction is, but despite a couple of appeals, they’re not saying.

      It’s impossible to predict what will attract interest. You can sweat blood over a post, research the hell out of it, and six people will read it. Throw one together in five minutes, and thousands will read it – you just never know. I used to get a bit grumpy because people read a lot of the old stuff rather than the new stuff, but the fact that it’s still being read, 2-3 years down the line, is probably an indicator of how good it was in the first place. Hopefully, if I’m still here, in another three years what I’m writing now will have taken over top billing. Or not – I tend to take the view, now, that as long as they’re reading my stuff, that’s all that matters.

      You can never tell when inspiration will strike, either. I got my Kindle 3 in the first release, and spotted an error in the manual (they ask for “password” when what they want is the router’s Network Key). Knocked out a quick post pointing that out, 43,000 hits later it’s still doing good business every day, because I notified Amazon too, and they couldn’t be bothered correcting it.

      And to prove you can’t please everybody, ever, a few months ago I got a comment praising me on my constructive and appropriate swearing (I use it for emphasis, not gratuitously, which most people seem to recognise, unless I actually am angry, when it might get away from me**), and last week I got someone complaining about the very same thing.

      **I try not to write when I’m angry – I never do my best work then, it’s too easy to lose focus – though I think I’m pretty good feigning anger when necessary. Got a title to live up to, after all!

      Couple of points. If you make any claims, you must cite yours source(s), with links if possible. Not just because that’s the protocol, but because there is always some bugger who will argue! And don’t engage with trolls and psychos – you won’t change their minds, and they don’t care what you think – they exist purely to piss people off.

      Have fun. (Not sure how you’d follow me from Blogger – probably best to put me in your browser’s bookmarks – or subscribe – then you’ll get an email every time I publish a new post.) If you’re on Twitter you’ll find me there too as @ransfromron (ronsrants was already taken). It’s a good outlet for blog posts too. WordPress does it automatically – not sure about Blogger. You can always tweet them yourself – it all helps to spread the word.

      Apologies if I’ve missed any typos – it’s late and I’m getting tired.

      Ron.

  2. Ron, just read everything, TWICE!

    Thank you so much. A lot to get started on. I like the world map you speak of; I’m ogling it to my right as I’m writing this. Gonna check the link you’ve given me on more tips on the art of writing sterling posts, of which anyone can see you have, down to a t. I’m in complete agreement about spelling and punctuation. I won’t profess to getting them perfect every time, but I do pay strict attention to them in the posts I have written so far.

    I don’t Twit, but, in light of what you’ve said maybe it’s time I did.

    I want my Blog to be about, essentially, the search for common sense, particularly focused on the UK and our way of life here. The British Criminal Justice System seems the perfect place to begin! At least, it does to me, anyway.

    Ron, your Blog is on fire, and so are you. Thank you ever so much for your advice, every bit of which I am, and will, absorb. As someone new to this Blogging thing, I’d be follish not to!

    Over and out, my new (and first) Blogging friend.

    Daniel.

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