I’ve been out of hospital a week now (feels like much longer), and all things considered, I think I’m doing pretty well in such a short period. Still profoundly weak, and very bad on my feet, which is hardly surprising but, more worryingly, prone to falling asleep in the evening and missing vital meds (I have alarms set – they’re not waking me). At least I seem to be in recovery mode rather than just treading water as I was in hospital.
Meds have changed focus too. First shot of the day is 16 tabs and caps, with 7 more top-up dribbles of much smaller doses every 6 or 8 hours – prior to this the distribution was more even throughout the day.
Seems to be working, though, as I tend to peak in the mornings now**, rather than around midday – though as those of you familiar with the buggeration of ME will know, that can change in the blink of an eye.
**Too soon to know for sure but this is showing signs that it will extend further into the day in time – if so, I might actually regain a social life. I might also be functioning better because I now eat breakfast. Mostly this is two rounds of wholemeal toast and mug of hot Bovril – the former dunked in the latter. Not much in the way of kcals per se, but as a proportion of my overall diet, quite a hefty hit.
Lunch is a moveable feast in that it mostly doesn’t happen. Hey, I’ve given in on breakfast – if I eat lunch too I’ll balloon! Today I have some pork pies to eat, before they go over, so two for lunch and the last one for supper maybe – or all three for lunch if I feel piggish. Pork pie? Piggish? Oh, please yourself . . .
I’ve noticed that I’m more dependent than ever on my inhalers, which can’t be good. However, if there’s one thing you can rely on with COPD, it’s that it’ll get worse. The more assiduously obsessive you are over your meds, though, the longer that takes, so work out a timetable and stick to it – it’s never too late. And the good news is that I’m responding better to my inhalers now, so swings and roundabouts.
Left APH, as I’ve said, with my 5th hospital-acquired respiratory infection, which I discovered was being treated with only half the required dose of Doxycycline. This, as you might expect, accomplished bugger all and I’m now taking a gram of Amoxyl 3 times a day to get it back under control. Call me Mr. Picky, but isn’t this what bloody doctors are supposed to do, not skulk around penny-pinching? And doc, if I seem angry it’s because I’m in ’kin agony – as I said somewhere yesterday, I feel as if I’ve been shot in both lungs. This is not fun! Trust me.
My weight needs watching as it’s climbing steadily – bad news because, even though I moan about being scrawny – and oh god, am I ever! – I want to return to being fat even less. And this is where it gets insane, and demonstrates what bullshit unquantified BMI measurements are – I’m a walking skeleton and yet my BMI, checked at nhs.uk, insists, at 27.5, that I’m overweight, with the potential to become seriously ill and, perhaps, die.** Absolute, and goddamned dangerous, bollocks! That seriously sucks – how many gullible teenage lives are you going to screw up today?
**Er, too late guys! And actually, I have a heavy frame (not “big-boned” but unusually dense). I’m also retaining fluid like the Hoover Dam – both these things artificially ramp up my BMI. Many athletes have absurdly high BMIs because the system can’t differentiate between muscle weight, frame weight, and flab so, kiddies, do not make changes to your lifestyle based solely on your BMI, OK?
As some of you will know, I’m currently being assessed as to my care needs. While I confess to an element of let’s grab it while it’s on offer, I’m afraid that’s not really me. If I’m honest (and assuming I’m not too close to the problem that I’m missing something), I don’t need a care package at this time.
I’ve said this in so many tactful ways I’m running out of tact, but it seems we have to run through a veritable Jacquard of preconfigured steps before someone calls time. Though I was asked if I thought I was getting anything out of the scheme this morning, which got a very firm No!
Look, I’m sorry guys, I’m just not. Ask my ex – she thinks I’m far too independent for my own good. She might have a point, but I am what I am.
Independence was forced upon me at an very early age. When my father died when I was 12, and my mother had to work full time, and often shifts – it was fend for myself or go under. No contest, and as I’d already been a latchkey kid** most of my life, it wasn’t a major adjustment and, hey, I taught myself to cook – cool or what? And breaking the habits of 56 years so I can play nice with strangers isn’t going to happen. Not overnight anyway, and probably not at all. I think we’re wasting each other’s time.
**Sorry, all you social-worker doomsayers, but not all latchkey kids succumbed to a life of drugs and crime – most of us were just normal kids, and responded appropriately to the trust placed in us by our parents.
I have made a few concessions so they can monitor the areas I’m being assessed on, like the ability to make a hot meal, or a drink, or dress myself. As for washing and toileting, well, they’ll just have to take my word!
I’ve learned, from my brush with death (as I’ve said, not melodrama – I doubt I’d have lived even few days longer if I hadn’t got into hospital when I did – and I do appreciate those who nagged me in to it!), that there will be times when I have to ask for help. And I will ask. For me, that’s the important aspect – you can’t make me have help if I don’t need it. I met people milking the system for all that it’s worth in hospital – I’m not one of them. So while you might perceive me as awkward and unhelpful, change your perspective, and try seeing me as honest.
On a different note, two days ago I raided the freezer for a couple of bags of Aunt Bessie’s pre-prepped Beef Stew. It needed tweaking to bring out the best in it but, hey, I wouldn’t be me if I didn’t do that. Hell, I’d probably tweak boiling water if I could! Anyway, I thought good, another pre-prep string to my bow – before discovering that it had been discontinued. Thanks guys!
And now I’m off to the bathroom to remove 7 weeks of beard and hair, and lose the Ben Gunn look!
I might be some time…
And I was, but I look so much better it’s amazing. I thought the beard and hair was hiding how gaunt I am – turns out it was making it look worse. Now I’m just a skinnier version of my avi, though rather more flesh on my skull wouldn’t come amiss.