Disclaimer

BEFORE YOU START: Please note that although I currently volunteer for both the Stroke Association and Age UK, the views expressed in this blog are strictly my own. I am not a spokesperson for either (or, indeed, for any) organisation, and I accept complete responsibility for the views expressed herein. I've tried to use the Glossary to explain any ambiguous terms, but if you think there is anything I've missed, please message me.

Tuesday, 29 January 2019

Out of Stock

I'm a bit concerned about the state of my meds. I order these electronically. I mean, it is all done through the NHS, through one of their approved pharmacies' web sites.

In theory, I fire off an electronic request to the pharmacy, who then contact my doctor's surgery for an authorisation. All of this is electronic. Lastly, the pharmacy pops my meds in the post, and they arrive through my letterbox a few days later. In terms of timescale, my pharmacy recommend you trigger the request 7-10 days before you want the meds to arrive.

Well, I sent a request last Monday, 21st January, 2 weeks before I'm due to run out. Apparently, this was approved by my doctor's surgery on 25th January, but it has not yet been dispatched to me. Apparently, some of the items are proving difficult to get hold of. I wonder if this has anything to do with Brexit? Although I note that we are still in the EU for another two months, so right now, absolutely nothing has changed from. say, 10 years ago! All rules and regulations are the same. The pharmacy told me that they are waiting on three meds, one of which is branded Bayer, one from Boehringer Ingelheim (which I presume are both German pharmas), but the third is generic, the only address I can see on my existing packet is Eastbourne, well and trulty in the UK and actually not too far from here.

I'm kinda concerned because the upshot is that next month, I will order 3 weeks in advance, to try and make sure the meds arrive on time. And, maybe I need to stockpile a supply of meds, just in case? A friend of mine published details of a campaign by his local doctors and pharmacists, aimed at discouraging people from stockpiling meds, but really, when the supply chain lets you down, what choice do patients have?

Hot Dog

For the last few days my sugar has been really high. I say "really high" - it was 11 mmol/l (200 mg/dl) this morning. OK, not really high but I'm used to single digits these days.

The culprit? Well, I did get myself a little treat at the weekend. One of those multipacks containing 4 x 4-finger Kit-Kats. That's English candy, a chocolate and wafer thing. I kind-of think that anything around these days must be internationally available, but I could be wrong.

I had my last one of these bars yesterday. But the whole bar is, like, 50g, I've had 50g bars of candy before and it is never even noticeable in my sugar readings. maybe  it's because I had one the day before too, and the day before that? I've observed that after some "bad" foods, it takes my body a good 2 or 3 days to get back to normal sugar levels (not "normal" - average for me).

The other thing I bought at the weekend was a packet of Bratwurst, plus some hot dog rolls to go with them. I had 3 Bratwursts - half the pack - on Sunday for lunch, plus another 2 yesterday for lunch. It is difficult to see the Bratwursts themselves putting my sugar up, although god knows what has been added to them in the factory. but those white bread rolls...

I'm normally very careful with my bread consumption. It is difficult to avoid it completely, especially as I rely on sandwiches for lunch. But usually it is, at least, wholemeal bread. The way it was explained to me, white bread is easier to digest (i.e. your body doesn't have to do as much work). wholemeal makes your body work a bit harder, so you end up using more energy to digest it, and therefore your sugar goes up less. A bit, anyway. I've never looked at this in detail but that's what I was told by a diabetes nurse and it makes sense.

I can't imagine white vs. brown makes that much of a difference, so my main "tool" in terms of controlling my sugar is simply to eat as little bread as I can, full stop. So the hot dog buns were a treat, I knew that. Plus, in one of those buns, you're eating far more bread than you would in, say, a slice of toast. But when I think of my diabetic diet, there are very few foods that I totally ban - most stuff, even chocolate, I just make sure my intake is sufficiently small - a bar per month, say - that I don't notice it when I test my sugar. But perhaps I just need to think of these rolls as totally off-limits?

As things stand, there is one Bratwurst left and one roll (I started off with 6 of each). I plan to have the last Bratwurst for lunch, but I can't risk the roll. I'm gonna do that and measure myself again come tea time.

This diabetes - having to worry about this stuff - is a real pita, although I must admit that I do find it fascinating to know that such-and-such a food will do such-and-such to my sugar. I guess I'm lucky in that I can test all this stuff on myself, it is all empirical. A lot of peope can live in ignorance of this, but for me, that knowledge is literally life or death.

I did take a little extra insulin this morning, just when I saw the high reading. I'm out this afternoon so I'll need to make sure I have my jelly beans with me, just in case. Although I'm in the centre of Salisbury so finding some food or other to put my sugar up a bit shouldn't be a problem.

Friday, 25 January 2019

Deal or no deal?

Sorry, UK politics again. Our current affairs at the moment seems totally dominated by the question of deal / no deal with the EU. I just wanted to put my thoughts down.

For my money, Day #1 after the referendum, there should have been an announcement that there *would* be a deal with the EU, or, at least, an attempt to strike one come what may. Exactly how much of life was encompassed by this deal would be subject to later negotiation. I'd see the deal having two or three parts.

Part I would be the amount of money the UK needed to hand over in order to honour its existing commitments. For this reason, it might have been better to leave at the end of a budget cycle, which I think is seven years. In theory, that commitment would then be zero, although I expect there must be a few things which span multiple cycles, so would probably be greater. The UK parliament (ultimately) could then argue with the EU about what that actual number was.

Part II would be to settle the things you would do going forward, in every circumstance. There must be several areas like this, where both the EU and UK gain pretty much equally. I'd suggest that something like guaranteeing the healthcare and security of ex-patriots falls into this category. Again there might be a cost, again it is open for barter, but the point is, you remove a lot of uncertainty from the equation.

Part III would be the optional things. Like, "we want unhindered, tariff-free, access to your markets, how much will it cost?" Again, you come up with a number (actually, numeric cost is just one of the factors here), then you decide whether the terms are acceptable or not. In that way, you kind-of cherry pick how the future relationship will look. The EU has said that "there will be no cherry-picking", but frankly this was a dumb thing to say, especially when they ultimately proposed a deal which included both free trade, and the UK government's wish to control immigration. If that isn't cherry picking, what is? But again, the precise numbers tbd. This is where is might get a little contentious, in that you argue whether you want a WTO relationship, or something more. Indeed if you want to ride piggyback onto something like Galileo or the Medicines Agency, it is difficult to see where WTO is relevant - the relationship we have with the EU currently is far wider.

So I think you come up with two numbers. The first is a number (not necessarily an agreed number, but a requested number) just to honour existing commitments and to guarantee some basics going forward.

The second number would take a bit longer to come up with, but would basically be what "the best" relationship would cost going forward. And the UK and EU could each decide what "the best" relationship looks like, or whether the price the other side wants is worth paying. Again I realise a lot of stuff is intertwined so I'm not just talking about money here.

In terms of making (the UK) parliament (and therefore the public) aware of where we are in the process, I think the UK government acts almost as a broker. "The EU wants us to pay £xbn/year for access to y", and let (the UK) parliament decide whether to agree or not. In that way, you don't need to rely upon any skill in negotiations - the UK government, or some appointee, simply relays what the EU is asking for, and the UK parliament decides whether this is acceptable or not. And, if the EU asks for £10bn for access to something which the UK parliament judges is only worth £5bn, then the UK walks away and everybody loses. So it is in the EU's interests to be reasonable. In any case, if all this is made public, then when people say "the EU wants to punish us to stop other countries leaving", this is something that we can all judge for ourselves. Possibly one reason for trying to obfuscate the process (as I think the UK government has done) is that they wanted a bigger role in the process. But I don't think, with the highest turnout this century in the 2016 poll, that the people of the UK (and, by implication, parliament) were ever prepared to accept opacity. Plus, of course, this has dogged the UK government all the way.

I must admit I was very surprised when, early on in the negotiations, the sum of £39bn (which the UK would pay to the EU) was mentioned, before any detail was made public. I thought, if this is just the price to honour existing commitments, then we will have another bill, an ongoing cost, to cover the future relationship. But as time has gone on, nobody has talked about this, even to say "this bill is zero". If the £39bn was intended to cover the cost of the future relationship as well, then how could anybody possibly know that number without also knowing what the details of the future relationship would be?

Sunday, 20 January 2019

Musical Tastes

I mentioned in a post a few weeks ago that I liked The Beatles. They entertain me, which I suppose is as much as you can ask from any band.

But, as I think about it, they're a league apart from the music that really makes me tick. I remember discovering Bob Marley when I was 18, unfortunately he'd already died. But he sang very politically-charged songs. The injustice of this, the unfairness of that. Quite rapidly, I got everything he'd ever released - on Island anyway. I mean, he saw a problem of black vs. white, whereas I've concluded that the problem is more rich vs. poor, an economic one, but then I've seen more of life than he did, and he lived in a very different world to the one I do. I mean, it helped that I took to the reggae music he sang - that led me to several black English bands like Aswad, who were quite happy to sing about the injustices they felt in the London ghettos, at least in their early days. Even anti-apartheid stuff from UB40 and Eddy Grant, although with these it was very much individual songs rather than following everything the band produced. So, there was a distinct "political" link.

Very different music, but the same political link, I listened to an album by the Grimethorpe Colliery Band this morning, and I'm a silly old sod these days so it brought a tear to my eye. To me, and probably anyone older, brass band music just evokes the coal mines, and of course the Miners' Strike of 1984, how an industry was destroyed by a few politicians to make a point. And, of course, the desolation that subsequently followed in pit areas. A brass band is a real working-man's thing, we even have one in Downton which of course is nothing to do with mining, but to me they evoke the miners nevertheless. Tony Benn used to say that his favourite film was "Brassed Off", a fictionalised story based, I think, on Grimethorpe Colliery Band. And I can see why, it evokes all those things that are good abour the labour movement. It is one of my regrets that I never got to one of the miners' galas up north. We have an annual festival not too far from here, commemorating the Tolpuddle Martyrs. I've cycled out to Tolpuddle but it is unreachable these days. Another regret. But I do think it is important to have these galas, and to keep the link there to remind us all of the struggle we still face.

Wednesday, 16 January 2019

The Way Forward

Gonna talk about a bit of news next. Last night, the UK Parliament chose to reject the proposed deal between the UK and the EU. It's difficult to see how it could have been otherwise.

For my money, the day after she was elected, Theresa May should have reached out and formed a Government of National Unity, suspending party politics, just like in the war. I'd have had people like Nigel Farage around, as an example of somebody who's been really vocal in his opposition to the EU. And, of course, not just Farage but vocal "remain" supporters, too. The problem there is that many people with the loudest voices, Soubry or Rees-Mogg, say, have risen to prominence since the referendum. But there were certainly some of the big players around before, Farage as I say. Maybe someone could have persuaded Cameron to stay involved in some way?

Even that could still have gone pear-shaped, but the chief goal should have been to deliver Brexit such that we exploited the opportunities, and avoided the pitfalls. The reason that the goal is to deliver Brexit is simply because that is how we voted in 2016. The reason that it might have gone pear-shaped is because I think a lot of people, even senior politicians, just want to ignore the 2016 vote in favour of not delivering Brexit. There's not a lot of "respecting the result" going on. Perhaps Cameron saw this, that's why he got out immediately? So maybe we'd have ended up in the same place, but I think it was our only chance.

Perhaps May would argue that she *had* tried to arrange a variety of Brexit positions around her? but all of these people were within her own party. In 2016, Labour was weaker, and May could have tried to build a consensus around something. After the 2017 election, they sniff hr blood. Party politics is well and truly alive and kicking, and, really, everyone is as bad as each other. When somebody talks about doing something "in the national interest", most probably it is a lie.

So, what is the way forward? Clearly the clock is ticking toward our exit on March 29, and much as the UK Parliament does not want to leave without a deal on the table, it is difficult to see how that will happen. Possibly the only option, they feel, is to pause the process? But, of course, many Brexiters want to get out as soon as possible, so they wouldn't be happy for a pause.

It looks to me as though (a) there'll be no agreement to pause A50, and (b) it is unlikely they will coalesce around any deal, especially one to which the rest of the EU will agree, before 29th March. So I think, unfortunately, that the UK will leave the EU without a deal.

Of course, just because there is no deal on that date does not mean "no deal" forever. Indeed, if things stop working, I'm pretty sure that there will be lots of haste to put something in place? The main reason that I wanted to see a deal was because the people who'll be affected more than me, the heads of retailers etc., all say they want something in place. I'm sure, if some of them start going to the wall (either here or in the EU, it cuts both ways), if any of these horror scenarios come to pass, that people will move pretty quickly. So, I think "no deal" is a temporary thing, but as experience tells us, it takes years to negotiate to some kind of arrangement from nothing. So, this issue isn't going away anytime soon...

Monday, 14 January 2019

Decreasing Sugars

I was happy last week because my spot-sugar was a "normal" (i.e. non-diabetic) value, about 5½ mmol/l (100 mg/dl). (After the last post, I'm going to try to quote both units.) But I observed at the time that a one-off value is just that, and not particularly important except in the context of all my other values.

Today, my average sugar - all the readings over the last month - dipped below 9 mmol/l (160 mg/dl), for the first time since I started calculating averages. This is not a particularly significant number in diabetes terms, so again this is mainly me playing with numbers rather than anything significant, but nice to see my average getting lower. I note once again that it takes two insulin injections per day to get to this level.

I also measure a statistical property called the standard deviation. It's quite straightforward to calculate, but not trivial. An application like Excel will calculate it for you. It is basically a measure of how much your sugar varies with each measurement. Obviously, if you take one measurement and you're at "really low", and the next measurement at "really high", then you have an average which probably isn't very remarkable, but it'll hide these extreme values.

So possibly of a greater cause for note is that I've got this variance down to about 1.4 mmol/l (25 mg/dl). So my average is 8.9 ± 1.4 mmol/l (160 ± 25 mg/dl). In a healthy person, your pancreas produces sufficient insulin that your body's sugar is pretty constant, so the smaller the it varies, the better. For me, whose pancreas doesn't produce enough insulin, 1.4 represents the smallest variance since I started taking measurements back in 2016. Because I take readings every day, I end up with 30 or so per month, so typically the standard deviation will only change by a tiny fraction per day, so it takes a while to notice much difference in the numbers.

International Readers

Side-by-side from my blogging, I am developing a Diabetes Management application. There are basically two different units in use (for glucometer readings) worldwide. This is not exhaustive but the UK, Australia, China use the units mmol/l. Most of the rest of the world uses the units mg/dl, including mainland Europe and the USA.

I'm developing this app, which I want to support both units, so I've read up on both units. But I got to thinking, and my wife confirmed this, that many people, even health professionals, are intimate with the one unit but know nothing about the other.

Starting from basics, both units are used to measure the same thing. This is like miles and kilometers. HBA1C is measuring something different. So there is a relationship between the two units, which is basically:

1 mmol/l = 18 mg/dl

So, to give an example, I've talked about blood sugars of 15 mmol/l in the past (I'm almost half that now!) - this is 270 mg / dl. My current average is 8.9 ± 1.4 mmol/l - I might say more about that in a later post - which is 160 ± 25 mg/dl. So clearly, above that of a non-diabetic, but getting better. As I'm starting to work with this new unit, I'm finding it quite convenient, and in fact I've changed my app to store the numbers, internally, as mg/dl. although, of course, it is just a number. Each number in the database carries with it some crazy-silly precision, so 10 or 200 doesn't make any difference to it.


Saturday, 12 January 2019

My Tiny Beatles Connection

I think I might mention it in one of my Bio entries, but I come from Liverpool, the same place as the Beatles. I don't make a big thing of it - I left at 18, I'm 51 now, so most of my life has been spent away from there. Keen listeners can detect a faint Scouse accent, but that's about it. In truth, as a teenager, Liverpool was a very depressed place, lots of unemployment, and I couldn't wait to start living life elsewhere.

As well as coming from Liverpool, I also like the Beatles. Again, nothing special in that, and many of us feel that particular music is directed at us, personally. If anything, my main love of music was Bob Marley, who sparked my love of reggae and of UK reggae bands such as Aswad. I still love that to this day.

But getting back to the Beatles, there is a vague family connection. When she was a child, my mum lived at 18 Arnold Grove, a small cobbled street of terrace houses in the suburb of Wavertree. At the same time time, George Harrison lived at 10 or 12 Arnold Grove. This would have been during the Forties and Fifties, before the Harrisons moved to the new estate in Speke. My mum's main memory was that Harrison's mum hardly ever let him out to play! I later read that Harrison often used the pseudonym Arnold Grove in order to travel the world anonymously.

In later life, when I was around, my parents moved to the south-Liverpool suburb of Hunts Cross (so, if anything, this is more of my mum's connection than mine) . This was near to Harrison's "new" home is Speke (though this was now the Eighties, when he'd long-since gone), and also not far from one of his later homes in Halewood. It was also not far from Menlove Avenue (Lennon's aunt's home) from Forthlin Road (Paul McCartney's childhood home and a street I had to walk past in order to sign on during the summer!), walkable to Strawberry Field and to St Peter's Church in Woolton. These places are all quite close to each other in south Liverpool. I walked past them all when I went back to Liverpool as a student - I had the time to walk places and besides, couldn't afford much other transport.

I don't pretend that these connections are in any way significant, they're no stronger than anybody else from Liverpool. But certainly anybody growing up in Liverpool was taught that the Beatles were gods, so it is not surprising that I like their music. And George, especially.

Monday, 7 January 2019

Sugar Success

Yay! For the first time in what must be many years, I measured my sugar this morning and it was a "normal" value - 5.5 mmol/l. It's a cause for limited celebration, as obviously the number is good, but I still need to take insulin to get to that level. But whilst I've always had the attitude "it runs a little bit high, but let's make sure it's not too high", this is the first time for many years that somebody could look at my finger-prick result, and not immediately realise that I'm diabetic. So whilst I've automatically conceded, I suppose, that I can't have "normal" sugar levels, actually, I can!

I mean, I measure my sugar every day so I know how much it can fluctuate. So I am just applying logic to it and saying that, in the grand scheme of things, this is just an abnormally low reading in the same vein as the abnormally high reading I got last Saturday (say), so the important thing to watch is my average, not a one-off value.

Of course, it also increases the possibility of hypos, just in terms of my sugar going too low. I've tended to avoid them mostly because I do let my sugar run slightly high, but if I'm down in the realms of the 5s and 6s, there is absolutely no reason why it can't go just little bit further, and go dangerously low. I need to watch out for that, although I do know what a hypo feels like so I should be able to notice if one comes on.

It does make me think, though. Just in terms of the sugar, the stroke, etc. I face this monumental battle each day, counting pretty much every scrap of food that I eat, whereas other people can just get away with eating whatever rubbish takes their fancy. You can't go through life moping "why me?" but you can't help wondering sometimes at what might have been.

I've tried to guard against hypos by immediately reducing my insulin dose, only by 5%. Let's see what my sugar is doing when I'm next fasting. Even if it does go high again, that small amount of difference in insulin must mean that it can't go too high.

Wednesday, 2 January 2019

Drama

We were used to drama over Christmas when daughter lived at home. These ranged from visits to A&E - for example, she would claim to be in agony yet the medical people could find nothing wrong, so you never knew what to think - to visits from the Police, either when she was thought to have done something, or when she'd decided to stay out all night.

Even though she has now left home, the crises haven't totally gone away. I mean, it is better now since we (the parents) are not directly involved, so ultimately we can shrug our shoulders, but it is nevertheless exasperating - my wife and I have over a century of life experience between us, yet daughter insists on making every mistake for herself.

This time, it is her motorbike. A brief history - daughter couldn't wait to get a bike and bought her first off a private ad on gumtree or somewhere. The bike duly turned out to be a dud. A potential lesson there? My own feeling is that you buy from somebody who works for a business servicing bikes for a living. Because it is highly probable that they don't want an angry punter banging on their door a few days later, so it has likely been serviced before it was sold. Plus, if this guy does a good job, they have automatic repeat business. With a private sale, there's none of that, everything is "as seen" so if you're unable to see that the bike has a problem..... Sure, you'll pay more through a dealer, but that's because a lot of the risk shifts their way. Plus, of course, I never had any idea how motor cars worked, but I found people who could be trusted to do a good job.

So, daughter buys a duff bike privately. Does she learn? No. She now had a second bike, also bought privately. She has only just got the thing back onto the road after some other problem, but she rode to our place just before New Year's - the thing kept slipping out of gear and was losing gearbox fluid. Daughter has said to me that even an expert in bikes (she's far from that) wouldn't have spotted this problem without getting dirty with the engine,  and that despite this, the seller was a good guy. So she poo-poo'd my suggestion that this guy had seen her coming. In any case, it misses the point, because a reputable seller would not have allowed this to happen - they'd have their reputation to worry about.

So at the last count, daughter is facing some time off the bike because she can't afford to get it fixed yet. The immediate effect was that she had to use public transport to go to Bournemouth on New Year's, and I know myself how much more inconvenient that is.

As I said at the top, I can afford just to shrug my shoulders here (mostly, although I think the money for this bike came out of my wife's pocket and I worry that she isn't getting a good deal). I'm past the stage of getting upset when I mentioned that the seller probably saw her coming, past getting upset that she assumes he's a stand-up guy, and I'm the idiot for even making the suggestion. It is a shame that whatever I say counts for nought, but I've had this since early teens, so I'm used to it.

Tuesday, 1 January 2019

Happy New Year

I'd like to wish everybody who reads this nonsense all the very best for 2019.

Life is fleeting so, please, don't take it too seriously.