Well I had various tablets which were diabetic tablets, and I can’t remember the names of them, but they didn’t particularly seem to work anyway. I didn’t, I never really got fantastic control over my diabetes.

I mean, obviously you know, what you eat affects it a lot, and I wasn’t so aware at the beginning about the hidden sugars in food. So I was aware that I shouldn’t have sugar in tea, and I shouldn’t have treacle sponge pudding or whatever, but I wasn’t so aware of the hidden sugars in food and, which, you know, I am a little bit more now. And so I think’ That I, you know, I mean that was quite a long time I sort of struggled trying to get control. And sometimes, you know, some days were better than others really, but basically I would say that my sugar levels were always more than they should have been, for quite a lot of years.

Now looking back on it all, what do you think you could have done differently?

I think I should have gone on insulin earlier because as soon as I went on insulin, that my sugar levels sort of came down. And I mean even on insulin, you can still can have high sugar levels, because it does depend on what you eat and it depends on, you know, how regularly you are at making sure you do your injections and all the rest of it. So you still can have high sugar levels but not as high as they used to be on just tablets. So I think I should have gone on insulin, really. But I didn’t push it and’ You know, that was it.

So when did you go on insulin?

I went on insulin as soon as I had as soon as I came out of hospital after I’d had the MRSA, I went on insulin. I was put on insulin probably about within two or three weeks of me coming out of hospital. And that was obviously to get stricter control on my sugar levels, which did work more or less straightaway and I was on a combination insulin. I think it was called Nova 30, for probably about a year, 14 months maybe, and that was working okay, but then I still needed better control. And after speaking to my diabetic nurse, she said that there was an insulin which, meant that you had to inject more each day, but would give better control, and so I’ve just gone, well I’ve been on that around about, probably about a year I think I’ve been on that.

And that’s called?

It’s the night-time insulin called Levemir, [insulin detemir] and the day time one I’m not sure.

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 much more accurate with your blood sugar readings. You have to be much more aware of taking them yeah.

Yes, I go to Pakistan. They also have a good system in place for dialysis, in Pakistan too. So, I get my dialysis done there too.
And so, a bit about, if you could talk a bit about your diabetes management in Pakistan in some detail?

Well, when you go there then obviously among your own people there is lots of eating that goes on. So over there, basically, what I have to do for my diabetes is that I have increase my dose of insulin. Because people just insist, ‘Oh please, eat this, eat that. So even though I am careful about my diet, but I do increase my insulin dose by one or two, so that my sugar stays in control.
So this dose that you increase, is that on somebody’s advice or?

Oh yes of course, I have checked with the doctors, my doctors here have said that when you look, check at night to find that your sugar is raised then take your insulin, take three or four doses. And if you find that with food as well, that you are eating the kind of food that carries the risk of raising your sugar, then also you can put two to three units [of insulin].
So the advice that the doctors give you, do you find it easy to?

…follow it? Definitely. I find it very easy.

I take 42 units [of insulin] in the morning, and 44 at night, which is quite high. Its’ That’s the one that suits me at this moment. It keeps my sugars level.

Has it changed over the years?

Oh yes. When I first started on insulin I was on something like about 10/10, just to find out, it’s like everything you titrate isn’t it? People might not know what titrate is – you find the level of the medication that you need to keep your diabetes in control. So I started going up and then of course my sugar was rising slightly, so I increased it with telling people what I’m doing and also with the consultation with a nurse or a doctor. And I’m on this level now.

I was finding that if I was taking more units in the morning, I found that my levels the following morning would risen, so this is why I take a high dosage in the evening – two more in the evening to counteract that – so I take 44 in the evening just before my evening meal – because that is normally your biggest meal. And then, in the morning, I just take say 42, and then I’m right for the day.

The people have to take insulin or tablets at various times in the day, more than twice, so if you were logging it, [write] it down [on the] log when you’re taking your tablets and what time you’re taking them, and also whenever you take your reading, what time you take your readings. So if you have to go to the doctor, he can see the peaks and troughs of whatever you’ve got. Its important that you record when you are newly-diagnosed and I’m not saying that you shouldn’t do it after, but it’s more imperative that you take it when you are newly-diagnosed, so that they can see how you’re reacting with your treatment.

I stick to a fairly standard regime where I have my breakfast, my lunch, my evening meal and a little snack at night before I go to bed. And my, the way I use my insulin that suits me perfectly, I go up and down a bit. But other people who are leading active lives and they want to keep their life as normal as possible, do things when they want to do them, rather than when their regime tells them they’ve got to do it. I think it is a much better, DAFNE, Dose Adjustment For Normal Eating. And I think it is a much better system for people with active lives.

So is your insulin, I mean the level that you take is that sort of fixed, you don’t change it that much?

I don’t change it that much at all. I have 26 of a morning, 18 of an evening before my evening meal and that seems to suit my lifestyle. If I am more active, if I’m going to be active, I tend to may take a little Mars Bar or something, have a chew at that. And that will raise my blood sugars to counteract the effect of the exercise that I am doing. So once again it’s coming back to this self-management. To be able to look ahead and say [to yourself] ‘Well’ I’m going to be doing that, I’m doing this, I’ll have that before I do it, and that’ll balance me out while I’m doing it.
These are suggestions that people have made you know over the years, and it suits me.

And I think everybody is an individual as far as that goes. And each person has got to adjust their regime to themselves, not to what other people are doing. They’ve got to adjust it for themselves I think. Trying to tell people, ‘Well you should do this and you should do that, and you should do that, like I do’ – that’s wrong. I think theres only one person who should tell you what to do and that is the doctor, or the clinic staff.

I think you should recognise your symptoms, be able to recognise when you are going low – particularly when you are going low – look at what you are doing if you are driving and things like that; what precautions should you take if you are driving any distance. I think all these things come under your self-management. You’ve got to plot it ahead. You’ve got to look ahead at what you are going to do, how you are going to do it. You’ve got to be able to analyse I think your feelings to a certain degree, what’s happening to you. And carry on with your normal life.

Insulin-dependence is quite interesting. You’ve got to make sure you’re going to eat within 15 minutes of taking the injection so, my experience has been if you eat out or anything like that, you’ve got to wait for your meal to come because, I’ve been in those restaurants where you order your food and then you end up waiting, so you can’t inject, order your food and then, you know, ‘Oh I’m sorry, what did you order? Oh it’s half an hour. Great. I’m the guy shivering under the table.

So there’s this whole thing of you know, you bring your support equipment out with you and so now I’ve got this rucksack with extra pockets in it that we bought, that has everything in it, and I mean I always carry a bag with me because I have so many things to carry around with me for the job, but, I don’t know… I think there is a symbolism of being read, [laughs] upon reflection. So yeah I feel like that’s me now, it’s on my driving licence, I’m going to have to wear it on my wrist. I’m going to, you know, I’m going to have to declare it wherever I go and whatever I do. And almost when you weren’t insulin-dependent it was less of a thing but now, because you are, there is an issue.

But I know the hospital always keep saying to me, you know, ‘How are your injection sites? Are they painful?’ And they never are, fortunately. The stomach one I have to be care-, the night one. Because it’s 12 oclock, 1 oclock, 2 oclock in the morning, you can be a bit forgetful. I have to work out what date it is. And if it’s an odd date I do it on the left-hand side, because ‘odd’ and ‘left’ are short words. If it’s an ‘even’ date it’s a longer word, so I do it on the right-hand side because it’s a longer word. So I do either side of the navel with the evening one. And the day ones, there are four in the day, I tend to use one leg for about a month and then I swap over to the other leg, just to keep it even.

In the same place?

Well, it’s about the size of a loaf of bread, small loaf of bread area, which I’ll stick it in somewhere. And we’re quite happy.