I took Teresa to Sainsburys this morning as we both wanted a few moments out of the house. She had wanted to go on her own, but my experience is that despite feeling better she wasn’t. By the time we got home, that was confirmed and we both crashed, that took out all the morning.
In the afternoon (after my nap obviously) I transcribed my tutors video notes on Task 2 into comments on the task – easier for me to process quickly in the context of what I wrote.
Thanks to the tutor I realised a way to do what I wanted how I wanted to – autoethnography – who knew? Probably any academic out there but I didn’t and it describes exactly how I want to study autism – from the inside.
Continued to watch the video feed of the docking of crew dragon (SpaceX) I suspect most (all?) of you think it is “boring, like watching paint dry for most, but for me, a child of Apollo, it is fascinating to be able to watch so much detail. Loving it.
Popped some (dried) kidney and black eye beans in to soak overnight,
Made chilli – always takes time – around 2-3 hours – all prep, then leave in slow cooker to cook for a few hours and then in fridge for a couple of days for flavour to develop. At this stage it’s very raw and misleading and the temptation is to “fix” it and I know its flavour changes (and improves) a lot given time, so leave it alone Bean (I did).
Had a nap
Trying for task 3 – didn’t get there.
All OK, then around 8pm needed loo, relatively normal
20 minutes later, wham the big D is back, took Loperamide and then to bed. 15 mins later – wham again dose – took another Loperamide
Went to bed (again) and laid still, woke couple of hours later and yes, wham again! This time (for the first time) it felt like things had finished and I didn’t take a 3rd Loperamide.
I now have a very sore “tummy” feel like I’ve been punched. It’s not agony it is uncomfortable and I don’t like touching my abdomen (and the pressure of clothes!)
Oh well, the joys of diarrhoea, I just wish I knew what triggered it because there was nothing obvious in what I ate yesterday. I guess it’s just “one of those things”, but it’s really no fun.
Diarrhoea is normal for me, almost every day, but this was a particular nasty time and it leaves you exhausted and sore.
Woke early, in the office earlier than of late but actually around my normal time from 18 months ago.
All ok, got back exhausted though I only got intermittent sleep from my nap, up and away and back in office for some work.
Poor Teresa has gone downhill with this virus. As seems to be quite common now but I don’t remember it being the case when I was younger, these virus’s come back for a 2nd and often 3rd bite at the cherry before they finish
Yup, she is back to feeling lousy.
Me, well apart from being constipated (go figure, my digestive system has its own life independent of me!) I am fine, just getting on with work. I had a constant waking night and a struggle to get out of bed (it took a good hour) but once moving I am ok.
Went to my GP this morning for a blood pressure review – something that happens once a year when you are hypertensive (which I already was before starting on the blood pressure raising cancer med – pazopanib).
He told me that one of my pain killers is not available at all – fortunately I rarely use it but he suggested I hoard what I have like gold dust. My primary Blood Pressure drug is getting hard to find, without it I cannot take my cancer meds!
Whilst there are possible alternatives (at the moment), my body is stable with my current mix of meds, any change is a problem and my cancer is only “stable”, instability of ANY sort is worrying. I take a cocktail of drugs all of which interact with each other, me and the cancer, at the moment there is a balance, I am not keen on anything that could disturb that.
What happens if my cancer meds themselves go short supply; I am truly screwed! For now, I have a three-month supply of that, but in three months’ time who knows what further mess our wonderful prime minister and government will have achieved?
This is MY life and that of very many others that our government is playing Russian roulette with. Hoping for the best is just not good enough.
I don’t care which side of the Brexit debate you sit on, the currently level of Mupitude displayed by our Prime Minister and her government and our MP’s is simply unacceptable and they ALL should be …. insert appropriate blood thirsty comment
One of the side effects of the amount of blood pressure meds I have to take (so that I can take the cancer drug – it’s 3-4 times what I was taking for high BP before) is that it can cause ED (erectile disfunction), all the fun of “brewers droop” without the beer (being tea total now!)
I discussed it with both the oncologist and my GP and fortunately, that blue pill, Sildenafil (aka Viagra) does not conflict with ANY of my meds or the cancer itself and its apparently not in short supply, can’t imagine any men in power letting that one run short?
However, it’s another drug I need (as part of our quality of life) in dealing with this cancer. At least it’s free for me, small benefit of either being over 60 or having cancer (both qualify for free prescriptions)
Nothing all day in the poo department, then there is this (very common) pattern:
I lay down and watch bargain hunt with Teresa, no hint, an hour later I roll onto my left-hand side to go to sleep and urgent messages and great gurgling’s in less than a minute and all out, well a rapid dash to the loo and then … Clearly moving my insides to that position “releases” something!
Woke 4am, gave up at 5am and here at work 5:30am
Desperate loo messages then all that happens is a pencil eraser size bit of poo + fart. That’s it, just exactly what was SO desperate?
A couple of hours later, similar milder messages, a bit of patience sitting waiting on the loo (where bit can mean 10 minutes) and all is well in the bottom cleansing department.
There is no rhyme nor reason for the variation. Maybe there never was and I’m now “obsessed” so notice it, …
So, stop obsessing Bean it doesn’t matter – it does if you are driving or in a public place and trying to find a loo is a major problem only to find – no need, but knowing that quite the opposite could be true and that REALLY is a problem.
The potential impact of impact on drug supply, indeed NHSA treatment in general is not a theoretical concept for me now, it is real and it is here. I am NOT alone. There have been warnings about this since Brexit was first mooted. Has effective action been taken, has it heck. So, if you voted for Brexit is that “really” what you voted for? I doubt it, no matter which side of the fence, most people are reasonable, albeit sometimes frightened,
But this is the real world and it’s not a game and I am all right might work if you truly are, but an awful lot of people are NOT all right and I did not vote for ANY government that would be this incompetent (no matter the party-political flavour). Oops yes, I did, and I have voted for all three of the “major” players over the years. Their level of competence has not really been any different, different sorts of incompetence for sure, but overall, nope, …
As for our old friend poo, well, it trundles on its own sweet way, taking no notice of me or the trouble it causes. Bit like the government really 🙂
You’ve seen pics of the detritus after I have portioned out my drugs, this is what a weeks supply looks like:
The cancer drugs are the two large pills in the centre compartment. ALL the rest are to deal with the nausea, blood pressure and muscle spasm issues that are side effects of the cancer drugs. Add on the extra drugs I take to control diarrhoea and constipation which I take “as needed”, the pain killers, and the new “blue pills” (to be taken as needed 🙂 ) and it’s not a small cocktail (though I know some have a much larger load than me).
That’s why I worry about drug supply issues, it’s not just the key drug but all the others necessary for me to be able to take the cancer drug and (literally) survive the experience (the BP issues alone would kill me if not controlled)
AND they need to be in balance, the anti-nausea drugs increase the risk of constipation others can increase the risk of diarrhoea, as does what I eat. Most of them affect (make worse) the fatigue.
I walk a tightrope and when successful I have an acceptable quality of life (albeit not at all what it was), when I slip, it’s really quite unpleasant. I’ve had the BP meds go wrong a couple of times and it is very scary, you know the difficulty I have with poo. The nausea is usually OK but I take strong drugs every day to keep it that way.
I am NOT alone this affects a lot of people, some more badly than me
“Ooops, we didn’t think about that” or “we hoped it wouldn’t be a problem” or (worst of all) “it’s not a problem” when it manifestly already is, is simply NOT good enough, especially given all the advice that it WOULD be a problem.
The Bean, Pendeen, 24-Mar-2019 5