The HBA1c of course when you have that done, that gives a long-term recording of what your blood sugars have been, and this something you can’t hide from them. You can hide tests, I mean you can say ‘I’ll test at this time and I know it will only be that’, you know, but if you are over or under, you can sort of say, ‘Well I can test now and all those tests will say I am at this particular point, which will look good’, but the HbA1c you can’t. You can’t organise or sort or do what you like, they’ll know what you have done when you have that blood check.

So you know it’s you have got, if you go every 12 months of course it means that you can do what you like for 9 months and then the other 3 months you have got to be careful, but you don’t do that, because it is really about 12 weeks that they can look back on when they look back at the HbA1c. But if you’re sensible you wouldn’t try to – well you’ve got to look after yourself.

I’m more aware of what I’m doing. And I do find that if I do more exercise than walking, it does bring it down, I don’t know if there’s any sort of factor there that says that’s what should happen or not but it does to me. Anything physical and it will reduce it, well that’s what happens. So to me it’s a good thing that I’m in control of it, and it’s not sitting about waiting and wondering if there’s something wrong. I know twice a day if it’s in control, and it has been for the last month.

Do you feel it’s better this way that you actually can see what your blood sugar level?

Yeah.

Compared to how it was?

There’s been a couple of occasions like yeah… It wasn’t totally under control I can relate back to Boxing Day when I was at my daughter’s house for the Boxing Day dinner, and that was [I] just probably over-indulged in the wrong things and I don’t mean alcohol, I mean sweets and desserts etcetera. And it shot off the scale, it was away back up at high twenties just for one meal, but again it dropped back down within 24 hours again. So you learn then in the early stages that doing the wrong thing can affect it, which long-term will have an effect. So I prefer not to do that now, and try and keep it in check.

So have you ever had what they call a hypo, hypoglycaemia, when your blood sugar drops a lot? Have you ever had something like that?

Only once has it gone down to 2. That’s it. It became 2 just once.

So then what symptoms did you have, how did it feel?

Like shaking. And I got very sweaty. And I couldn’t stand up. So then I knew that it’s very low. So then, you know milk, I put 2 or 3 spoonfuls of sugar so then I drank that. And after 5 minutes, I was okay. So, if that ever happens to me, I know that my sugar must be low. Sometimes I test it too, when it’s low then I do test it, sometimes 3 or 4.

And so how often do you test your sugar normally?

I test it after every 2 weeks.

You don’t test everyday?

No. Sometimes, it happens, sometimes, I do it after 3 or 4 days, otherwise every 2 weeks I definitely do it.

And what has your doctor advised you?

The doctor says that, ‘Everyday you should test your sugar. But I don’t do that. He does it, hes also given me a book to write in. In the morning, before eating you should test your sugar. Then after food, after two hours, two hours, you have to check again [laughs]. It’s too much for me. So I stopped it. I just test it myself sometimes, test myself. So when I test myself, nowadays it’s usually 6 or 7. Roughly till about 9. It’s never higher than that.

So the doctor asked you to test everyday, why don’t you do it everyday?

Huh…Lazy. I am too lazy.

Does it cause discomfort to test yourself, is that why?

No, it’s not that it causes discomfort, just like that, you know. What’s the discomfort, it’s just a machine, it doesn’t take any time to test. You stick the needle in, and you just check it. That’s it. Easy, it’s easy to check you know. So just that, I’m lazy.

No but if you imagine that a doctor might listen to this recording, and the doctor is trying to understand why you don’t test your blood, so what would you say to them?

The doctor will say to me, ‘Why have you come here for?. That’s what the doctor will say to me. Doctors do say that, if sometime you don’t check your blood, ‘Why have you come here for?.

So what would you say?

Huh. What is to say in that case? I’d just say, ‘Can’t help it.

So if the doctor did really want you to test your sugar everyday, then what would need to happen that you start doing it?

If he said to me, ‘If you don’t test your blood everyday, then you don’t come here anymore. I’ll take your name off the list. Then I’ll have to do it. Then I’ll have to do it.

I have a glucose monitor machine. And you get, you have little lancets, like little needles. And you turn the machine on, it whizzes round, and a little strip comes out the end. You prick your finger with the lancet. You put the machine with the little thing that comes out the bottom on to the blood. It soaks up a bit of blood, takes about two seconds. It then does something in its machine and a reading comes out. So it’s very simple.

But I think the cylinders for the little tabs are probably not cheap. Well, I know they’re not because I’ve bought some. But I think it’s my way of, that’s my way of keeping my sugars down, my sugar levels down, is to do it every day. I mean maybe it will come a time when I don’t feel I have to. But it’s working at the moment and that’s okay. And I don’t mind the needle, I don’t mind the pinprick every morning, you know. That’s fine.

Do you use a different finger every time?

Yes. And, but even so they do start to get (looking at fingers), because I don’t, I mean I don’t know what people, I’ve not really examined what people do who are on insulin and have to check their bloods four times a day. Presumably theres, they use different parts of their bodies or something, I don’t know. But, no, that, that seems to work for me at the moment.

One of the most difficult things for me was doing my blood tests every two hours. I absolutely hate doing that because I am needle phobic and deliberately stabbing myself to make blood come out is something I find difficult to do. And after about two weeks of doing it every two hours, my fingers were so full of little scar tissues, that I was actually having struggling getting blood out. Getting the machine out and the blood would drain from my arm – ‘You’re not having any of me.

So how do you manage that now?

Well I don’t have to do it so often now, I only do it now when I feel a bit, something doesn’t feel right and I have to check what my blood is.

Right. And did you, did they teach you how to do that?

Oh yes. The diabetic nurse at the, when I first saw her, the first time I saw her a few days after I was diagnosed’ She said, ‘Oh I’ll give you a machine and you test your blood and this is what you put the sharp thing in here, and you put it on there and you press this button and it stabs you. I mean they’re all very matter of fact. ‘You know, you have a go. And it hurt [laughs].

You see, one of the problems with chronic pain, is that little pains become big pains. People don’t always understand that. So the little tiny scratch is actually a very sharp pain for me. Because my brain can focus on that compared to the pain in my back. And so it does. It’s just one of the problems you have if you’re a sufferer of chronic pain.

I’ve just written a little Excel package that I just, you know, put it on. It actually helps me to remember to do it, because I walk past my computer and I think, “Oh, yes, I must do that.” So it’s an aide-memoire really. But it also enables me to give the nurse and the doctors at the clinic accurate feedbacks of my last six weeks’ readings.

So do you update it every time you take a reading?

Yes, oh, yes. It’s an ongoing reading. It’s only about six weeks now that I’ve been actually doing it like that. Because my testing kit actually has a memory on it and we could, if they wanted to, I could take that in to the clinic and they could actually print a readout of all my readings over the last six months. But they don’t.

It was quite a lot, quite a juggling act when I first went on it. More so that the one I originally went on because that was two injections a day, and although my sugar levels were higher they seemed quite stable. They didn’t fluctuate that much, but on this insulin you have better control using it, but you have to be much more accurate with your blood sugar readings. You have to be much more aware of taking them, yeah. So.

So how often do you do your blood sugars?

Now I can do them twice a day, and that’s fine. But when I had to do them every before I ate, after I ate, four times you know I mean eight times a day, and then I’d usually do it before I went to bed as well. And first thing in the morning, so that’s about ten times a day. But my fingers were like pin cushions [laughs]. But I had to do that because you have to be very you have to have very tight control on your sugar levels and get it in with the insulin that you’re taking. So.

But that’s made it harder for you?

It did in the beginning. Yes, it did. I mean that’s quite a struggle to do that because I have to take it to work as well, so it’s, it was quite a struggle, but it was worth it I think because my sugar levels have come down more.

And do you feel better in yourself?

I do feel better yes. I do feel better. I used to get really, really tired. I used to be asleep in the evening on the sofa, just fall asleep just watching TV, which I don’t do now. I never do that now. But I wasn’t aware at the time that that was what the problem was. I didn’t, I just thought it was probably just age-related [laughs]. I don’t know. I didn’t know, I was just tired, I didn’t put it down to being diabetic but yeah.

And do you ever check your blood sugar yourself?

I do. Every couple of days I check my sugar level and make sure that’s right. As I got all the instruments and everything provided by my GP. And I check at home and everything’s fine and it’s all controlled now.

But you mentioned before that they’re going to change the treatment?

They’re just going to add another tablet, you know, that’s what they’re saying. And most probably I’ll, they said to me, I have to go tomorrow to see my GP, and they are going to decide, you know, what sort of tablets they’re going to add it on, just to make sure. Because the thing, what they want, they want my sugar level to be below 7. Which is, at the moment sometimes it’s 7 and sometimes can go a bit higher, which, they’re not happy with that. So that’s what they going, they’re trying to do, just to make sure it’s below 7. Yes, there is, sometimes there is below 7. But they want it all the time to be controlled. And so that’s why they’re going to put me on the medicine.

And do you, do you note it down when you take your blood sugar reading?

I do. Well, when you’re, it all started when I found around being diabetic. About the first six months I used to check my blood sugar every day and I used to write it down and everything. So just to make sure when I go back to see my GP to show them the results and how everything, how everything is working out. So they can see how was my blood sugar and how they can decide, you know, how, what sort of medicines I’m going to have it, that sort of things.

And now it’s not every day?

No, it’s not every day. Every two or three days, something like that, you know. When I, if I feel can, I should check it, I’ll check it, you know. Because I know myself, you know, if it’s going to be right or not, because from your own body you know whether it’s going to be right or not. If you feel it’s going to be a bit high, then most probably I’ll check it, you know, or if it’s going to be a bit low. But when it’s right, you know, you feel in yourself everything is fine, you don’t bother with that.

Once every six months or so. I mean it’s left to me to make the appointment. I think they would probably remind me if I left it too long. I mean, when I first came out of hospital after the Miller-Fisher knowing I was diabetic, I went straight to the shop and bought myself a blood sugar meter and because they’d been monitoring me four times a day, well no, certainly every meal so more often and I thought it was quite important. But the trouble is test strips are ’30 for a set of fifty and I just after a bit, it just got too expensive, by the time I’d… And the GP and the diabetic nurse said, ‘You don’t want to do that. You will get worried or something by it if you” And so I just gave up.

I mean I didn’t see why I mean I wasn’t prepared to keep spending money for something ‘ and I mean I was, I just tested myself every morning and I mean for weeks, I was just on, pretty much exactly the same every morning. And I thought well if the nurse and the doctor say I don’t need to do it, I’m not going to keep spending ’30 every couple of weeks just to do this. So in a way, I would be’ I’ve still got the meter, I suppose I ought to kind of get another drum of strips, calibrate them up and just occasionally test myself just to be on the safe side. I’ve got a blood pressure monitor that I use occasionally just to check, but again that usually’ Always seems to come up okay.