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. I am based in the UK and the blog therefore has a UK bias - I've tried to use the Glossary to explain any terms which might be ambiguous, but if you think there is anything I've missed, please message me.

Wednesday, 29 November 2017


Today's menu:

Breakfast: porridge (oats/milk/water),
Lunch: 2 x Lincolnshire sausages,
Mid-afternoon: low-fat yoghurt,
Supper (& post-supper): Chicken Tikka Masala and rice, low-fat yoghurt, apple

plus, of course, many cups of tea (and a latte)! I note all this mainly for my own benefit, to try and better understand how my sugar varies. Every day is broadly similar, although I do like to snack on brown-breaded toast (from which I abstained today).

To counter this, my steps for the day are 4,500 (right now), but this does include a drop-in at the hospital. Other days can be far more sedentary. It's unheard of, these days, for me to get to 10,000 steps (which was effortless before the stroke).

Back on the subject of food, I was in the hospital coffee shop today (ordering my latte) and the guy in front baulked at this jam-tart-sized mince pie thing, priced at £1.79. Fair enough, but he also had one of their (instantly-forgettable) Bakewell Tarts for £1.39, not to mention a cappucino for, I think, £2.75. I mean, all vastly overpriced, including my own drink (£2.50), but I find it interesting to see that fine line where something jumps from "acceptable" to "unacceptable".

Charitiy Anverts

When I first had my stroke, obviously it affected my brain. One aspect of this was my perception of emotional things. For example, I found myself in tears watching an old James Herriot episode. I could rationalise that these people (and the dog!) were just acting out a storyline, and that the storyline itself was most probably fiction, but nevertheless...

One of the things that happens during recovery is a gradual "hardening", back to the point I was at before the stroke ever happened. The same things are right, the same things are wrong, it's just that my coping ability has changed.

To that end, every other ad on tv at the moment is an appeal on behalf of a charity. People are desparate, animals are desparate. But you become immune to it. You realise that every cause is a good cause. but we all only have so much cash to throw around, so we need to make choices on how much we give, and who we give it to. By implication, this also means that there will be many causes where we have to say, "I'm sorry, but I can't help you".

Monday, 27 November 2017

Medical Apps

Ha, ha, they are talking on the radio about one of these apps, where you have a video link to a doctor, and the doctor diagnoses your ailment.

It all sounds great, but I'd settle not for a diagnosis, but simply to be able to order my repeat prescriptions. I haven't actually seen my doctor since I had my stroke, and furthermore, because I test my own sugars and blood pressure, I don't really feel I need to see them. But fvery time I need some more meds - a couple of times per month - I am forced to take two trips to the doctor's surgery. I'd be happy to use some secure login to a web site so as to avoid these trips. There is the notion of electronic prescriptions within the NHS, where I can order my repeat meds online and pick them up straight from the pharmacy. A good idea, but it is not yet universal.

Thursday, 16 November 2017

Current Blood Sugars

Since the stroke I've been very disciplined in measuring my sugar every morning before I eat anything. The numbers themselves, though, aren't quite as impressive.

When I was first diagnosed as diabetic, 20 years ago, my sugar would always be in the range 6-8 (mmol/l), which really is quite indistinguishable from somebody living without diabetes at all. There then followed a period where I didn't really measure myself, until the stroke. By definition, levels leading up to the stroke are far harder to know, although at one point in hospital just afterwards my sugar was over 30! (caused not even a half dozen Mars bars, but by white bread which I avoid since) Everybody got very worried, and the doctors put me on an insulin drip for the next twelve hours.

Anyway, after that scare my blood sugar is under far better control, but clearly I have damaged my pancreas. The result is daily readings, generally of between 10-15 mmol/l. Under 10 is good.

I'm obviously very careful with what I eat now, but there is room for, say, a slice of cake here and there. There is a definite link between the carbs I eat, and my sugar. Exercise also comes into it, although the link between the three - I can't tightly define it.

I got up yesterday and measured my sugar at 15. This is very much at the upper end of the scale regarding what I regard as acceptable. So it was a frugal day.

Just to give an idea, yesterday's menu comprised:

breakfast - porridge (oats, water & milk),
lunch - 2 x mini pork pies,
late afternoon - 1 x mini pork pie (they come in packs of 6),
supper - ½lb high-meat-content pork sausages (no carbs or veg yesterday) plus a low-sugar yoghurt

and that was it. Apart from the observation that I'll soon look like a pig, no snacks, apart from the one mentioned, whatsoever. And, a ward drop-in to boot, so probably a mile's walking to and from the bus stop. Tea, of course (I drink it by the gallon these days), but although I have it with a dash of milk, there are very few carbs being consumed.

The end result of all this was a sugar reading this morning of 6.9, which by my standards is very impressive, probably the lowest since the stroke (and bear in mind that there is now a dataset of hundreds of daily measurements). I was quite anxious, I really hoped it would go back down on its own, I really don't want to end up just taking more and more insulin (until?) So I feel able to relax a little today, as evidenced by the two muffins I just had for breakfast. Roll on tomorrow!

Wednesday, 15 November 2017

Training Session

The Stroke Association had organised for me to attend a trainig session yesterday, one of those mostly-internal things organised by the local hospital, mainly for ward staff. On the subject of aphasia, the difficulty experienced by some stroek survivors in terms of speech (and, I learned, in terms of muddling up what is heard).

I was aware that I was primarily a guest on the course, and it was a subject I'd like to know more about, so I was happy to be quite flexible to get onto the course, to the point of paying for myself to get up to the hospital (too early to use my pass). It's the kind of thing that I can embrace as a one-off, but not really something that I want to make a habit of.

Anyway I got to the designated location a good fifteen or twenty minutes early, only to be told "oh, you're very early. We didn't expect to see you for another hour yet." So I wandered back to the little coffee shop and re-checked my email. Sure enough, I had arrived at the time requested on the message. Anyway...... Maybe the plans had changed at the last minute and they hadn't got around to telling me? I certainly didn't expect to be the centre of attention, definitely at this session.

So, anyway, I rocked back up an hour later, only to be told that my session had started an hour ago. Somebody had assumed that I was attending something different. I mean, thereafter everyone was extremely apologetic, but untimately I'd still put myself out and missed half of the session to boot!

Not very impressive. I mean, in my former life, I even used to be unimpressed with many of my clients' staff up in top London banks, so at our tiny provincial hospital in Salisbury, my expectations are lower still! I do think that in most things in life, there is style and there is substance. People tend to be good at the "style" side of things, but not so good at the "substance", actually being as good as they sound. And the poor old co-ordinator from the Stroke Association, also at the session, was also quite miffed.

Funny, we met someone last weekend who happened to be an Occupational Therapist who worked out of the not-too-distant Poole. One of the subjects that came up was the standard of life at Salisbury.

You kind of assume that there is a flat standard across the country, plus of course the vast majority of us only ever know one trust at most, so we're not qualified to compare. But I wonder....... Maybe it is little things like this, which taken on their own are pretty negligible, which aggregate and make a difference?

Still, the highlight of the day was meeting a couple of other survivors, as part of the session. I'm glad I got the opportunity to do that. With some very few exceptions, people are lovely. And speaking to these real people was far, far easier than the classroom scenarios. It may be that sufficient water has passed under the bridge, but certainly the conclusion I formed was that it was impossible to crack the hypothetical scenarios without some metadata passing between the parties. Maybe the thing to take out of all this is that, whether wuith aphasia in particular or stroke in general, is that we need to get to a certain level, in terms of recovery, or we're stuffed?

Up there again today to do a drop-in on the ward.

Tuesday, 7 November 2017


A mate of mine (both online and real-life) posted today that it was the sixth anniversary of his stroke. He hides the effects well, although he says that even now, every day is a struggle somehow. I suspect it will always be so.

It kind of makes me think, "how do people perceive me?" I mean, if I'm just sitting there having a coffee, it'd probably take a keen observer to work out that I was only using one arm. I suppose when I'm moving about it is far more obvious, as I walk both jerkily and with a limp. I lose my balance quite easily (but am able to take remedial steps). I'd expect this to get smoother over time. And hopefully I'll be able to use the arm for more.

Interesting also that he has a clear memory of when his stroke was. Lots of people do, but I don't, possibly because for me it seemed to happen over several days rather than being a milestone event. I mean, I know things started going wrong on a Sunday in early February 2016. I delayed going to hospital until the Monday (possibly a mistake), when I underwent some tests(!) and was sent home again (so maybe not a mistake). With my co-ordination worsening, I went back on the Wednesday, when I was finally admitted. I was at least able to stagger at that point, although my memory of most of my hospital stay is not being able to walk at all. But anyway, spilt milk. I suspect I could deduce what these dates are, but I'd need to start looking at calendars/email trails to do so. And it doesn't seem overly important these days.