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.

Saturday, 31 March 2018

An audience...

I must admit I write this blog mostly for my own benefit. If I write about a goal or an achievement, or even a feeling I have about something, the blogging platform conveniently adds a timestamp, so if I look at a post a year later, say, I avoid any tricks my memory might want to play. I've noticed, for example, that I mentioned a goal in here - when I achieved that goal I thought I might have been attempting it for six weeks or so, but when I looked on here I found that I'd actually been writing about attempting the goal for some six months.

I happened to look at Google/Blogger 's stats page today and was quite surprised. I kind of realise that most of the stats are down to me, where I proof-read recently-published posts to check grammar  and just to check that the post makes sense. But whenever someone visits the blog, Google captures things like the user's operating system and browser type. I know that each browser presents itself slightly differently when it requests a web page, and by storing and analysing the differences, you can deduce what that browser is. This approach also tells the platform (Windows or Macintosh, for example). And by capturing the user's IP address, the platform can do a partial reverse lookup and tell (at a high level) a user's location. For example, if someone looked at my own computer's IP address, they could find out that I come from the UK, and my ISP. But they couldn't know my name or address, say. Of course, the ISP is able to link my name and physical address to my computer's IP address, or at least they know whose account they leased that IP address to, which is how law enforcement agencies can track down people who, say, threaten other people online. If the law enforcement agency can be bothered to get a court order to make the ISP tell them who is involved, that is.

Anyway, I look at the stats, and although most of the hits are down to me, I can see signs that tell me that not every hit is down to me. I'm seeing non-UK hits, from the US, Ireland and Australia. And I use the Firefox browser on pretty much all my devices, yet I see hits from things like Internet Explorer and Safari etc.

So, if you're one of the people who has fallen into my blog......a big hello to you!

Friday, 30 March 2018

Daily Diary

I'd dearly love to build up a picture of what happens to my sugar throughout the day. Ideally, it should be pretty much a flat line, so I wonder how much I vary from that? Today is a bank holiday here in the UK so I'm going to be stuck at home all day. To this end, I'm going to not only record what I eat (I've done this occasionally anyway) also to take my meds as normal, but also to record my sugar every hour or so. As regards eating, I'm going to try and keep the day as "typical" as possible, obviously subject to hunger pangs.

I'll start by recording my "getting up" sugar, and at the end of the period will try to construct a graph to make things easier to interpret. Unfortunately the blogging platform that I use (blogger.com) doesn't allow me to present something as sophisticated as a spreadsheet in my entries, so I'll unless I can think of a better option, I'll probably end up taking a screenshot and posting the image or two....The values themselves I can put in a table.

Blood Sugar Details - 30-Mar-18

Time of Day Sugar (mmol/l) Event
08:30 10.2 Getting up test
09:30 10.4 Test
09:45 Morning Meds plus breakfast. Insulin (44 Units), BP Meds, then Redbush Tea (no milk), Porridge (milk and oats, garnished with sultanas). The food should raise my sugar, but the insulin will lower it
10:30 12.2 Test
11:30 13.1 Test
12:30 10.7 Test
13:30 7.7 Test
13:45 Lunch. 3 pieces wholemeal bread, sliced chicken breast sandwiches, low fat/sugar yoghurt, clementine, black tea
14:30 9.4 Test
15:30 10.6 Test
16:30 Afternoon nap!
17:00 13.8 Test
17:15 Snack: Tea and 4xCrackers
18:10 13.0 Test
19:00 12.1 Test
19:45 Evening Insulin (44 units)
20:00 13.4 Test
20:15 Supper: dusted fish, oven chips, peas, tea, zero-fat yoghurt
21:00 12.3 Test
21:45 14.2 Bedtime Test
05:30 Saturday 11.3 Test. Got up for a pee
These numbers all translate into a graph below. I've tried to adjust the colours so as to improve the contrast:

Blood Sugar 30-Mar-2018

Observations:

  • it looks a bit like a sine wave, centred around 10 mmol/l and varying maybe ±5 mmol/l, give or take. I'm not sure how I can reduce the variation unless I lower my second insulin dose, and then add another one at 3 or 4PM
  • First thing in the morning, before I eat anything, my sugar stats pretty steady. I wonder, if I just spent the day not eating and not taking meds, whether that would still be the case? Logic would dictate that just day-to-day living would consume energy, so eventually sugar levels would get lower
  • The morning insulin took me down to about 7, so I'd be reluctant to increase it further just yet
  • I seemed to reach a peak up to about six o'clock, then my sugar went down naturally, without insulin. I didn't have my second insulin dose until around 8PM
  • That my basal level was slightly higher on Saturday morning than on Friday morning is probably something to do with having chips for supper. For that reason I'd be reluctant just to perform a blanket raise my evening insulin, irrespective of the food I eat
  • The fast insulin has nowhere near the effect of the slow insulin. But there again, it does form only a quarter of the mixture
  • I don't eat much food these days!
  • I need to be careful about how much I read into these numbers, as in many cases we could be talking about the tolerance of the glucometer itself. I wouldn't want to assume that the glocometer was any more accurate than +/- 10%, despite what marketing material might say
  • The glucometer needs new batteries and my fingers (bear in mind I test on just one hand) feel like a pin cushion!

Insulin Pumps

I went to visit one of the Diabetic nurses at Salisbury Hospital today (yesterday). It was kind of a follow-on from my visit to see the nurse at my local surgery (see here) but this guy was obviously far more specialised. I must write about the meeting more fully in the next few days, since it was quite productive, but for now I wanted to concentrate on the discussion we had about pumps.

"You know how they all work, right?" I thought I did, but allowed him to explain. You just basically set a rate manually on the pump, and it pumps the insulin into your body at that rate. Presumably for a certain length of time. And that's it!

What a crock! So all my assumptions that it would measure your sugar, then pump in insulin as required are unfounded. My ideal pump would take a reading, then deliver a small amount of insulin, then keep repeating that loop until your sugar lies below a certain value (which would need to be user-configurable). Of course, it would have to be fast-acting insulin - there's no point delivering a small dose then having to wait a few hours for it to take effect. So, maybe a cycle every half hour or so would be appropriate (fast acting insulin takes around 15 minutes to act. It varies by insulin type, so that's a general number)?

So basically the pump does one simple action - to replace the manual process of pushing a plunger on a pen with something more automatic.

So why don't they work the way I perceived? Well, at the outset I'd have to say that I'm still unsure that they don't. I'm sure I've read in marketing blurb that some pumps will offer a kind-of "advanced warning" that you're about to have a hypo, so how can they do that if they're not measuring? So I need to clarify this.

But in terms of technical issues, I can think of two. First, if all you're doing is delivering stuff, then you just need a one-way pump. However if you're receiving blood as well, then you need a two-way pump. So things become more complicated. But, insurmountable? The second issue that needs to be overcome is the pressure difference. Obviously the blood within our bodies will be flowing at a higher pressure than the insulin in an insulin reservoir, which will just be sitting at atmospheric pressure. I say "obviously" - that's why we bleed when we cut ourselves. So, given that the task is pumping from the low-pressure reservoir to the high pressure bloodstream, there is an obstacle there. But wait a moment! We already have insulin pumps which deliver from a low-pressure reservoir into our body, so this problem has already been solved!

Of course, I have to temper these thoughts with the high level knowledge that pharmaceutical companies are full of very bright people, and have a very keen eye on making a profit, so why are such pumps not available already? It's a bit like the Fermi Paradox, but for insulin pumps!

Monday, 26 March 2018

Medical Exemption

I found a letter last night - I was sorting through some mail - from the NHS, which told me that I needed to renew my medical exemption certificate. (Having such a certificate means my prescriptions are redeemable at no further cost to me - I don't use the word "free" because, of course, I have already paid thousands in taxes.)

But it is interesting. Once upon a time, people either got these subsidised prescriptions or they didn't. If they tried to get subsidised prescriptions without entitlement, then presumably they are guilty of fraud. But you bring this certificate into the equation, and it becomes central. So not having the certificate becomes the salient point, not someone's entitlement to the exemption.

I noticed the same thing several years ago, when the photocard portion of my driving license arbitrarily expired - I was still entitled to drive afterwards.

Another weird one was that they told me that I had to fill out a paper form, but I searched and couldn't find this form online. My particular disability means that I can't use my writing hand any more, so it is far easier to type something than it is to write. The reason it is "weird" is because, especially with a medical exemption certificate, you'd think it would attract a disproportionate number of disabled applicants. You'd think they, of all people, would have an eye on accessibility.

Saturday, 17 March 2018

Puzzled

Last night, I happened to be looking at Facebook. I was in a stroke group, and there was a new member message. This person had replied that her 80-year-old aunty had just had a stroke, and that she wanted to find out more.

The Stroke Association publish something which is quite useful here. It starts off briefly with what a stroke is (the technical stuff) but then talks about statistics. Splits by age, ethnicity, gender etc. I found it useful because each stroke is so different, you can only hope to make sense of it by looking at it from a high level. So anyway, I posted a link to this document and thought no more of it.

Later that evening I saw messages from this group saying that my ability to comment had been temporarily suspended. I thought at first it must be everyone in the group, but I searched around a bit and found that it was specifically directed at me, I'd been "muted". Now, my principle is basically that if I'm not allowed to comment on something, then there's not much point in me even seeing it. So I decided to leave the group. It was no big deal, it was the kind of group where some of the members would post meaningless stuff such as "good morning" and "good night", neither of which appeal to me.

But all the same, it would have been interesting to learn what I'd said that was so offensive in the first place.

Tactics

Because of diabetes and stroke, my eyes aren't so good any more (see elsewhere in this blog). One of the ways in which this manifests itself is that I find it difficult to quickly differentiate the different coins when I'm out and about. I try to deal in just £1 and £2 coins, any smaller denomination I shove into my back pocket, and when I get home I stick it into a piggy bank.

This piggy bank had now become full. So I a ctually bought off eBay a coin-sorting machine, which not only sorts the coins, but will also count them so I can put them into bags. So this contraption arrived yesterday, I plugged it in and it took just about 15 minutes to sort the coins. It would have been a lot quicker, except this first time, I insisted on verifying its complete batches. No mistakes.

So, when it had finished counting, I had a total of around £70, of which I think £46 was able to be bagged up ready to take to the bank. However, given that this machine cost £70 itself... But it saved me lots of time.

Incidentally, I was expecting a compartment "none of the above", just somewhere it could use for coins it didn't recognise. A catch-all mechanism. But there wasn't one. So I couldn't resist sorting my small pile of Euro coins, just to see what happened. The result? The machine obviously makes a "best guess" at what the coin is. Unfortunately, since it has been calibrated for Sterling, when confronted with Euro coins it got things hopelessly wrong. So I think there's a way to go before they have a "perfect" device. But as long as I make sure all my future coins are Sterling...

Tuesday, 13 March 2018

Running out of insulin

Had to take a journey into Salisbury this morning, to drop a prescription off at a pharmacy.For anybody unfamiliar with UK prescriptions, I discuss them in my glossary, so won't describe them further here.

So I had this prescription for my insulin, which was issued last week. We went to the shops at the weekend, but like an idiot I forgot the prescription. As of now, I have one-and-a-bit pens left, just 3 or 4 days worth of insulin, so it was really quite important that I get some fresh insulin pretty soon. Hence my trip into Salisbury. I should really have gone yesterday, but....

The pharmacy didn't have the meds in stock, they reckon it will take 48 hours to get it in stock, which cuts things finer than I'd like, but I should be ok. As an aside, the sharp observer might wonder, when you've got a city whose hospital prescribes a certain med, that the city's largest pharmacy doesn't carry that med as a stock item. Seems a bit daft to me, it should all be more joined-up, but what do I know?

Drop-in 07-Mar-2018

I meant to mention, I did my drop-in last week and it was actually quite a good visit. I had been warned beforehand that there were lots of people on the ward who were receiving end-of-life care, and that it would probably be of limited worth. However when I turned up, there were certainly lots of very poorly people, but there were also some quite distraught relatives there, it was nice to chat to them and possibly offer some hope that there might be life afterwards. It never fails to surprise me how polite people are - mostly - in such an awful situation.

It highlights, I suppose, another difference between a volunteer and a staff member. The staff are very patient-centric, but I think it is important to connect with relatives too. I can't really offer much, but I can possibly shed some light on the changes that they might expect. I know the overall statistics are favourable, in terms just of survival, so I can quite easily apply a positive view on the fact that somebody's father or mother is lying there looking very sorry for themselves.

Friday, 9 March 2018

Faster than a speeding bullet....

Yay! I don't really expect this to mean anything to anyone else, but I just had to go out and pick up a prescription from my local doctor's surgery. About a 1½ km roundtrip.

Anyway, I looked at the clock on my return, and I got there and back in less than an hour! I'm getting quicker! Now for a nice cuppa....

Salisbury Stroke Support Group (3)

So yesterday I finally put this page "live". We're at: http://salisburystrokesupport.org.uk

The only whiff of complication here is that I wrote a date generator, just so we can say firmly "our next meeting is on 1st January", or whatever. If we just said "every fortnight" then we'd be forcing someone, even after they found our page, to contact us to find exact dates. The page had been sitting there for about a month, fully developed, and I finally got some feedback I was waiting for. Although the page was sitting there ready to go, there were two last-minute developments:
  1. I spoke to a representative from the Stroke Association. All of the group had thought it more professional to use their Salisbury office (which is unmanned but which has an answer machine), as opposed to an individual, as the main point of contact.The Stroke Association originally seemed quite "up" for that, but on Wednesday, they said they weren't. It sounds to me like there's been some steer that they want nothing to do with us. But that doesn't really matter, as the group has always functioned as a standalone group, at least since I've been going there. It does have implications, because the Stroke Association originally offered to get some flyers printed up for us, but the decision to say we're a totally separate entity means that the offer has evaporated. So of course, saying this saves them the cost of those leaflets - which of course might well be the driver in the first place. But I'm clear on what this original offer meant - getting a few hundred leaflets printed up costs around £25 (I looked yesterday). So we were never being promised the earth, exactly. Of course, they might have seen these flyers as the thin end of the wedge... Anyway, I've just used my own name and number instead.
  2. On the web site I had used the same font as the Stroke Association, basically because it associated us with each other. People would see their leaflets up at the hospital, see our leaflets, and make a link. I'd tried a few times to locate the origin of the font, with limited success. Yesterday, I happened to come across some copyright information for the font. It pointed to a London design agency, which sells......fonts! Again, I couldn't find the font i wanted to use on their web site, but there were other fonts on there which they wanted to charge several hundred pounds for people to use. There was a vague "if you're a charity, call us" but I judged that, whatever the cost, it was unlikely to be zero. In any case, we're a peer support group, with no formal arrangement between us. And from my perspective, I really didn't even want to spend even a penny, so instead I used an Adobe font (which I am licensed to do, by virtue of owning a license for one of their other products). Last minute change, therefore. As a bonus, this new font seems a bit crispier and smoother. It's still quite "scripty", which I think is informal, but possibly easier to read? You be the judge:
Old font:

 New font:


Tuesday, 6 March 2018

Why I blog

I'm involved in an online discussion at the moment. A woman has recently had a stroke. Fortunatley not a lot of damage by the sound of things, although she has noticed inexplicable mood swings.

Emotion is a very tricky thing to quantify. I remember I was a wreck when I left hospital. Just to be able to walk back through my front door again was so significant. Since then, my recollection is that I have got a lot better in all sorts of ways. Many of them are recorded in this blog, which must be very dull for your average reader. But I make no apology for this, as it records what I was able to do, or how I felt about something, at a specific time. For me, this is hugely important because it is strange how the memory plays tricks. For example, I can set myself a goal and faff around trying to achieve it for what seems like a month or so - but sometimes I can check back here and see that, actually, it has been six months!

On the same subject, I was reading the blog yesterday of the woman who has early onset dementia (I've written about her before), and she says that the main point of her writing is to basically give people hope that there is life after diagnosis. I have to say that my own goal is somewhat more selfish, in providing a record for myself. In saying that, I do recognise that the only way out of this is to continually push myself, and if this gives inspiration to some stroke survivors, then all well and good.

Incidentally I've seen a few comments in this woman's blog about how she does inspire people. (I even had one comment once myself about how I was inspirational, although since it only happened once I'd assume I'm not very inspirational 😊). But certainly from my perspective, I'm not inspirational. Lord knows, I have my faults, as my wife will testify! I'm just an ordinary guy who has been put into this shitty situation and is trying, as best he can, to get on with life. So I'm afraid I take words like "inspirational" with a pinch of salt. I mean, people mean it as a compliment, so that's nice, but beyond that... Someone like Anne Frank, for example. I mean, her story brings into sharp focus how terribly human beings can behave towards each other, but this was an ordinary young girl who, along with her family, was attempting to hide from this. Not doing something heroic, but getting by, doing what had to be done. So, someone who has been thrust into a shitty situation and who tried to make the best of it. In her case, by keeping a diary (which was never intended for publication). But, where have I heard that description before? I'm not comparing myself to Anne Frank here, I'm just saying that I appreciate where she's coming from in her diary.

Thursday, 1 March 2018

Snow

So, in common with the rest of the UK, I look outside and see whiteness. We have only had about an inch so far, although the big fall is expected today. The hens haven't seen snow before, they don't like it and have gone back to bed.