This is me – right here, right now…

In the post Ethics? Ha! (April 13), I detailed how I was offered a deal – stay off Twitter and get the best care available, or continue to piss people off (i.e. tell the truth about APH), and well, not get the best available care.

So yes, briefly I sold out, before coming to my senses, withdrawing my consent to invasive testing, and threatening to discharge myself.

Anyway, a large part of the initial conversation was the doc explaining in detail what was wrong with me (way too much), and my chances of survival (way too little). Whatever choices I made, whatever road we ultimately went down, I was still going to die. That was his view then and I never heard a contrary opinion from him on that subject.

The cumulative conditions – well-established and newly discovered, the latter a mixed bag of organ malfunction, deficiency conditions and drug toxicities – can be treated, but not cured. For example, reducing Phyllocontin to the point where it loses its toxicity also reduces its efficacy to close to zero. This will not aid my ability to breathe!

So OK – I’m dying. I knew this before I was ambushed and, indeed, have survived longer than I ever expected to, having suffered from life-threatening illness since age 2, and sneaked my way past several predicted end-points to still be here at 68.

I don’t doubt that there are people out there who will view my impending ** demise with less equanimity than I, and I regret that, but I’ve been fighting this battle for so long – since even before I knew I had a battle to fight – what does a 2-year-old really know of a brush with death, or months of measles-induced blindness? – I’m feeling pretty damn used up right now.

** Just how “impending” no-one is saying – all I can tell you is that sometimes, now,  I doubt my ability to make it as far as my next breath. So far, pretty obviously, I have.

Let me stress, though, that I am not simply going to quit (nor end things myself), but the coming weeks are going to be critical, certainly from a psychological perspective as I’ve been worryingly close to tipping over into a breakdown on a couple of occasions (and might actually have done so without realising at the time).

I will not, then, be rushed. I shall progress at my own pace (which is improving – I’ve done more today than yesterday, and more yesterday that the day before). I’ll get there.

How long I remain there is anyone’s guess – I promise it’ll get my best shot.

But back to APH, and I was assessed twice by physios. The first time I was walked the length of two beds, slowly and painfully, and pronounced perfectly fine (if I’d had to crawl on my hands and knees those useless fucks would have said the same thing!).

Anyway, someone disagreed with them as a couple of weeks later they were sent back – with poor grace – to try again. Slightly longer walk, during which they were snarled at for being loud and patronising.

Guys, I lived on that ward, it was home for 6 weeks, there was no need for you  to point up the presence of walls and doors, or people, or trolleys – hazards I managed to navigate up to 50 times or more a day** without your  “help”. Grow the fuck up and learn to treat people with respect!

Same result!

** On my insanely frequent, round-the-clock trips to the toilet to indulge my new double incontinence skills!

I was asked, though, to grade my pain on – you’ll love this! – a scale of 1 to 3. WTF?

On a scale of 1 to 10 most days it’s off the damn scale, and that’s with my meds maxed out. I rather suspect I told them not to be bloody stupid. (Psst! Yep, I know it doesn’t matter what the scale is in real terms, but people’s perception of it does, and 1 to 3 is risible in the minds of most people.)

I have, at the moment, my 5th hospital-acquired respiratory infection. It is being “treated” with Doxycycline at half the dose needed for common bronchitis and, needless to say, it’s not working, and my lungs are flooding, as I type, with toxic crap – time to self-medicate. There’s a surprise!

Hmm… The swelling in my legs has gone down perceptibly since I got home, and it’s just occurred to me that the reason for this might be the absence of hot drinks, which come round half a dozen times a day in hospital.

Most had tea or coffee, but I had Bovril until I’d exhausted the supply, then switched to soup, and I can’t help wondering how wise it was for someone with severe peripheral oedema to be chugging about a litre of salty liquid every single day.

Don’t get me wrong – I enjoyed it. It broke up the day exactly as it was intended to do – maximum customer satisfaction at a low cost** – I just don’t think it was suitable for me.

**It also allowed me to have breakfast, as I could dunk the execrable rubber toast! Really, guys, if you fuck up toast so badly, you ARE in the wrong job.

Doctors, nurses, physio, OT, CT scan crew, all commented on how huge my legs and feet were – no-one ever asked how much, and what, I was drinking. The question has only just occurred to me as I made my second Bovril of the day. I think, though, that the expectation that this question should occur to staff  rather more than it does to patients isn’t unreasonable.

And I’m restricting myself to just a couple of 300ml mugs a day, since you ask! By the way, if anyone knows a source of 300ml china mugs, please share (most mugs are 400ml or more and heavy earthenware). I have just one, rescued from a box of old crockery that was being binned, and I find it the perfect size for a hot drink. Plus, for a wobbly spoonie, the lightweight china means it’s not too heavy when full.

Finally, I usually claim to be 67. I am, in fact, as was brought home to me at APH, actually 68. That birthday fell during the period last year when I was beginning my slide into the darkness, and failed utterly to register.


22 thoughts on “This is me – right here, right now…

  1. Since you are someone with a very obviously life-changing ling-term chronic condition (well, more than one!) I’m curious to know whether you’ve been offered any kind of proper counselling? I mean beyond having the odd encounter with someone alerted by PALS or whatever. With so many chronic conditions it seems that it’s all a visit>referral>discharge cycle for the body and nothing for the mind or the family/friends. I’d be interested to hear your thought on this when you have a moment, Ron. And keep on bloggin’ – you’re a virtual friend and touchstone to many.

    • Nutshell answer is no, nothing.

      To be honest, until this recent – er – adventure I’d have said that my mind/brain was probably my most robust feature, and pretty much all that can be relied upon to function properly these days.

      Getting what amounted to a death sentence changed that (why, I’m not sure, it simply confirmed what I already knew – it’s not like it was a secret; I think it was the fact that nothing could be done to alter the outcome – heads I lose, tails I still lose – that tipped me over), resulting in a bunch of crying jags in hospital and a huge emotional meltdown when I got back home.

      I’m still, it seems, reasonably resilient, if not as bombproof as I’d thought and, if not actually bouncing back to normality, I’m getting there quicker than I anticipated. Baby steps though – don’t want to overdo it.

  2. should be a given…… arranging counseling for someone having to deal with numerous conditions. . i had a load thrown at me all at once or it seemed…….. but in actual fact it was over a period of about 2-3 years. but it just felt like the world was crashing down on me until last July i finally got some help in the form of 5 weeks of CBT…not 5 consecutive weeks mind. 2-3 weeks between each session. naaaaa i thought.this aint going to work. but it did. possibly too much so really as i let a lot of things lie for ages before doing something about it now. mind it doesn’t help not being able to book an appointment with the doc yu can actually feel easy with..nurses.nurse practitioners are what you get mostly and you cant book in advance. has to be the day you want the appointment and sods law as to who you get. usually the one staff member you cant talk to at all.
    but yes. ask for it… thats what i did.

  3. Hi Ron’
    Huge legs for such a tiny gobshite, with a robust ego…God you are a little TURD. ME ME…

    • This is Fred, people. Admire his massive bravery as he hurls abuse while hiding behind his keyboard. Come out you syphilitic twat and I’ll rip you a new arsehole!

      I suppose allowances could be made – he is insane after all – but no, let’s not. Rabid dogs should always be put down. Though in Fred’s case that probably means I owe rabid dogs an apology, gutless sack of shit that he is.

        • Not that easy on WP, sadly. There are other sanctions, though, which have been activated.

          He’s really pretty pathetic, I suppose. Hell, he can’t even put a good insult together. And I do honestly believe he is actually insane (this is just the tip of a rather large iceberg of lunacy).

  4. I think u are unbelievable! Need to learn how to use Internet properly! Only just discovered you and I am addicted! Will be amazed if this gets to you! X

  5. Glad your still fighting…Ive been on a death wish…I think! I just wan t some peace …Cant fight ATOS Doctors,had 2 both gavediffernent opinions…last one said I have NONE WALKINGAIDS ETC., OTHER asTOS DOCTOR AT LEAST NOTICEiHAVE DISABLED BAY OUTSIDE HOUSE, LONG GRAB RAILS TOFRONT DOOR, GRAB RAILSIN PASSAGE,STAIRS,BATHROOM,GRABSTCKS, 3 WQLKING STICKS ,INTERCOM BELL,, iHAVE ME,diagnosed over2o years ago at RoyalFree Hospital andcoppetts wood…Icoildnt get outofbed, yet ATOS Doctor said Icould walk 100yards easily, !!?? I had med rate care, Because Ineededsomehelpwith mobility,RHA disease, Diabetes Type 2, high bloodpressure,high cholesterol, ,now kidney disease…Iappealed forsome mobility,its gettingso hard to walk/move,do anything withthis agonising pain. Out of breath etc…its been over 18 monthssinceappeal,2 Tribunals,last onerang2hoursbefore and adjourneditagain!..That was June 2012! They say Idontneed any carecomponent,ormobilty, notrhingwrong with me!!! How can they do this? I nearlykilled myself,Iamsodown, (PC playing upsorry} I amso illand down,this makesmy MEworse…SORRY boutRantRon:) x

    • OK – I’m so out of the ESA/PIP loop I can’t offer Darcy any useful advice. However, I’m sure there must be someone out there who can.

      How about it, guys? Little help here please . . .


      • I served in the RAF and was at the Maralinga, Australia , A Bomb tests. in September 1957. After two years I suffered illness after illness eventually taking a medical discharge & so called “War pension ” @ 60% rate. I have Osteoporosis, Osteoarthritis, COPD, replacement right knee, awaiting shoulder surgery and I still have to have bi-annual “assessments”

        I have had a blue badge for many years, always use a stick, struggle to walk 30 yards these days, the joint pains kick in at 30 yards so I do not try that hard to walk further .

        My first ATOS assessment was a farce, trying to bend the duff right knee when it has a 20 degree bend at best, they attempted to get me to raise my arm when the shoulder is clearly buggered, the Consultants letter said so ( I took a copy with me ) ;-).

        I felt that the ATOS report to the War Pensions Office would state that I was fit, so I pre empted the ATOS report and emailed the Pensions office with copies of Consultants letters and my view of just how painful it was to be pulled about by the ATOS staff.

        After 3 weeks I received a letter from the WPO in which it stated that as I do not get benefits, just my War pension, Old blokes pension and Company pension I should never been asked to attend the assessment! What a waste of time and money!

        Darcy you should appeal, provide up to date letters from consultants & Doctors. I wish you good luck and if you have the strength…. KICK ATOS in the nuts !

      • Darcy, you MUST contact a law centre near you… that’s preferable, or unemployed workers centre (if there are any still open) or CAB. try in that order. if none available near you,try your nearest, look online for the main law centre office and they will give you the one that deals with your area.Law centres are very good on welfare rights. most UWC’s are too. CAB can be depending on the lawyers they have attached to your particular need someone to represent you and help you state your case in your next appeal. whatever you do DO NOT GIVE IN much as i appreciate your feeling like doing so/. what this lot are doing is abominable. we all have to stay as positive as we can be and wait our time. Karma is a fantastic thing.and i hope i am still alive to see cameron.his cronies and the ATOS lot get theirs. preferably ASAP..please God.

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