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Ron's Rants…

Focusing on disability benefits, and sharing my experiences of COPD, heart failure/aortic valve calcification & stenosis, ME/CFS (27 years), and general disability/mobility issues, in the hope they will help others, along with books, cooking, and anything else that piques my interest…

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Ron’s Rants – the future?

January 27, 2011 by Ron

Well, dear Constant Reader, normal service isn’t being resumed as soon as I’d like, I’m simply too ill and, not to mince words, trying very hard not to die. And no, I don’t do hyperbole, sadly.

As some of you know, I have pneumonia – so much for that bloody vaccine! – and pleural empyema. Basically, my left lung is – or was, it’s improving now – a huge abscess (for those familiar with the condition, don’t get picky, that’s a good enough description for those who aren’t).  In addition, the allegedly minor COPD-related heart failure that’s been lurking around the fringes for years appears to be working quite hard to polish me off. Stern words needed with my GP on that one – why, for example, was it never monitored?

And I’m quite heavily drugged at present, which is preventing me writing the article about Arrowe Park Hospital, Wirral, that needs to be written, because the place is a chaotic hell-hole.

So, assuming I can get past the current crisis, and that’s by no means totally certain at this stage, though it’s looking more promising, then some lifestyle changes are needed if I’m actually going to have a life to change, and taking things extremely easy is the first step. Bloody-mindedness and a refusal to just quit can take you only so far – sometimes you just have to give way a little. Or a lot, even. Life might be crap, but it’s mine and I’m kind of attached to it!

In the interests of taking it easy, I’ve just bought a power chair – a remarkable bargain, too – £849 delivered and set up. I just lucked into their sale, it’s normally £1299  http://www.betterlifehealthcare.com/view_product.php?prodID=7619

It’s a folder, which I don’t really like as they tend to creak, but hell, right now I’m in no position to be picky. And I know how to fix that, anyway.

That I have no more beer is a given – heart failure and large doses of fluid just aren’t compatible, never mind the alcohol, and with the money I’ll save, come summer, I can load my chair into a taxi and go out for the day somewhere – Ness Botanical Gardens, over on the Dee side of Wirral, will cost around £40 in fares, for example, but it’s not as if I’ll be doing it every day, just a few times a year. Closer to home, the lake, with birds to photograph, and a nice pub for a (beerless), lunch nearby, is about £20 in fares, and that I could do every week. (Royden Park, Roodee Mere, and the Farmer’s Arms, for those familiar with the area.)

All I have to do is get through this current mess. I am getting better, but as I discovered today when my Sainsbury’s order arrived, there’s still an awfully long way to go (now the empyema is improving, the pneumonia is making its presence felt more – I simply couldn’t breathe well enough for it to be a factor before, now I can breathe somewhat better, but not well enough to speak above a whisper – I have almost no voice at all), and I’m sure I’ll feel better psychologically, at least, once I have my chair (next week sometime), and I can get out of here for a bit of fresh air.

In addition, it’ll allow me to do things like my laundry, and taking out rubbish, on a regular basis, not just when I’m able to, which is often no more than every couple of weeks (luckily I’m not short of clothes or bedding). Festering rubbish is no fun, though. As some of you know, I live in a supported flat – still, after 14 years, trying to figure out exactly where the support is!

I’ll sell my scooter, it just didn’t work out and I’ve no real idea why – it really should have been perfect for me. Actually, with the benefit of that wonderful thing hindsight, it’s clear I’ve been incubating the empyema for at least a year, or more (night sweats are a major symptom, and I’ve been sleeping on towels for well over a year – that’s now stopped, which is a little seed of hope), which may explain the overwhelming apathy and tiredness that’s affected me for so long. It also explains why my need for antibiotics has been so much higher during that time.

Back with the scooter, and now, of course, manhandling it into my flat is quite impossible. I can ride it out easily enough, but it’s proven impossible to ride back in, I have to lever it sideways first, with a pickaxe handle, before it’ll fit through the door. Just can’t do that ever again.

Ah well…

Bottom line, I’m dying; I was, by all accounts, extremely lucky to survive last weekend (not to mention 4 totally sleepless days and nights that had me on the ragged edge, and got me a negotiated early discharge on the grounds that my chances were better at home than amid the chaos there), and there’s a lot of that hill still to climb. That, I’m afraid, people, is the unavoidable crux of the matter, but I intend to do all I humanly can to try to make sure it’s not just yet (insofar as I have any control over it at all). To be fair, I’ve done well to get to 66 (at 17, I was expected to be dead by 40).

Somehow, that’s no consolation. Not at all…

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Posted in The future of Ron's Rants - and Ron | Tagged Blogging, COPD and heart failure, Empyema, Health, Pneumonia vaccine, Ron's Rants | 14 Comments

14 Responses

  1. on January 27, 2011 at 12:33 am Sarah

    I often read your blog, though i’ve never before commented, not sure why really. Anyway, I just wanted to say hello and to thank you for an informative and interesting read. Truly hoping that you start to feel a bit better soon.
    Sarah x x x


    • on January 27, 2011 at 8:46 am Ron

      Thanks Sarah, always good to hear from someone new.

      Ron.


  2. on January 27, 2011 at 8:38 am Kelvin

    Hi Ron, good to hear from you again but sorry to learn you are in such a bad way at the moment. Hope for your sake and ours that you are soon in a better condition and will be keeping us entertained in your usual amusing/insightful/caustic way.


    • on January 27, 2011 at 8:49 am Ron

      Hi Kelvin,

      Thanks for that. I do actually feel a bit better today – got my appetite back, which is an improvement. Baby steps for now, though . . .

      Ron.


  3. on January 27, 2011 at 9:15 am Deborah

    Hi Ron – I’m so sorry to hear all this. I do so hope you come out the other side – and am very glad to hear of your slight improvement with regard to your appetite. Keep us posted if poss.


    • on January 27, 2011 at 9:29 am Ron

      Hi Deborah,

      Feeling rather more positive today, too – dropping the heart failure news on me when I was already a basket case was just so damn stupid. It could have waited a week or two (it’s not as if they’ve given me any meds for it!). As it was, it totally wiped me out emotionally.

      I’ve been thinking, too – for all those who know I’m a fan of self-medication in the face of NHS failures to do so adequately, looking back over the past year or so, there is absolutely nothing I could have done differently that would have changed the events of the past week by one iota, and I have no intention of beating myself up over it.

      Ron.


  4. on January 27, 2011 at 9:47 am wayne

    hi ron
    keep on fighting butty, been reading your blogs for a while and wished i had commented sooner, anything a middle aged computer nerd with copd can do just email me
    good luck
    wayne


    • on January 27, 2011 at 10:04 am Ron

      Cheers Wayne. Hoping to be back up to speed in a few days, barring setbacks, as I’ve got a hell of a lot to write first.

      Ron.


  5. on January 27, 2011 at 11:52 am alan

    Hi Ron, Glad to have you back once your a bit better you can give us all the news of your wonderful hospital.


    • on January 27, 2011 at 12:14 pm Ron

      Damn right! In all honesty, I think I’d rather die than go back into that dump for any reason. Or get a taxi to another town!

      Its full title is Wirral University Teaching Hospital NHS Foundation Trust. Just one tiny fly in the ointment – we don’t actually have a university! And I think that’s exactly where much of the problem lies – too many novices, completely inadequate supervision.

      Ron.


  6. on January 27, 2011 at 4:51 pm caroline

    Hi Ron, so sorry to hear that you’re so poorly. I’ve been reading your blogs for a while but never left a comment. I have COPD Emphysema severe since November and I’m only 46. It can be quite frightening at times. As I write this I’m being treated for an infection so feeling pretty crap. My dad had this debilitating disease for 2 years before he died in 2008. I saw how it affected him and should’ve stopped smoking then.Anyway Ron I hope you’re feeling better soon . Take care. Caroline.


  7. on January 28, 2011 at 11:16 am Ron

    Hi Caroline,

    You’ve probably already read the post in which I says this, but while COPD can’t be cured, it can be managed – I was diagnosed 16 years ago, and this is my first major crisis.

    Managing your meds really needs micro-management – you simply cannot be too obsessive about it!

    Work out your timetable, bearing in mind that all timings are per 24 hours – for example, if a drug is prescribed twice a day, that’s every twelve hours, not twice during the time you’re awake – and stick to it come what may. If you go out, take your meds with you – I often take my portable nebuliser, if I have to. If that embarrasses other people, too bad – it bothers me not at all – my health is more important than some stranger’s discomfiture.

    Print out your timetable and post it where you can’t avoid seeing it.

    Better yet – and this is what I do – set alarms on your mobile phone. Most smart phones allow as many alarms as you like, other may be limited to 5 or 6, which is still enough. Mobes that only allow one alarm are useless.

    If you have Outlook installed on your PC, you can use that to set as many alarms as you need each day.

    Ron.


  8. on January 28, 2011 at 2:43 pm adgeboy

    hi ron sorry about your setbacks and the hospital in wirrel,but a bet we have lots like it around the country but they keep it all very hush hush,good luck adgeboy


    • on January 28, 2011 at 2:49 pm Ron

      Ha! Check out the most recent post for the full, gory, details. These buggers would put Nazis to shame for being pussies!



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