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.