Malcolm - Interview 14
More about me...
In 1992, when Malcolm was 39, he went to the optician for a checkup after a motorcycle accident. The optician found some evidence of retinopathy in Malcolm's eyes and referred him to the GP who diagnosed type 2 diabetes.
Malcolm had no family history of diabetes and the news shocked him. Looking back he feels he may have had various diabetic symptoms for many years, including thirst and tiredness. He hardly saw his GP, partly because he was busy with a young family and partly because he had a stressful job.
After his accident, Malcolm stopped doing sport. He settled down, married and realised he had started to gain weight. With hindsight, he wishes he hadn't put on the weight because he feels it probably contributed to the diabetes. Once Malcolm realised he had diabetes he started making regular trips to see the diabetic nurse, who gave him good advice about how to lose weight. So he feels in some ways that the diabetes was a good thing because it forced him to start to look after himself better.
At first Malcolm managed his diabetes by changing his diet, but eventually he was prescribed oral medication because his blood glucose was too high. He takes gliclazide, metformin and pioglitazone. At the time of the interview Malcolm had been ill with four bouts of pneumonia, and was taking steroids which were pushing his blood glucose levels up.
He feels quite relaxed about the possibility of being put on insulin in the future. He says that unlike tablets, insulin can be easier to manage because the dosage can be altered according to how much exercise and food you have taken. He is chairman of the local Diabetes UK support group which helps him keep up-to-date with new developments in the management and treatment of diabetes.
Malcolm's wife helps him to keep eating the right food.
When you came home and you told your family You were on your own when you were…?
No, we were married then. Yes, the wife, the children were very young, so they didn't know anything about it, but the wife and parents and relatives were, were quite shocked. But all rallied round, all helped. And the wife was always on to me about what I, you know, the food I used to eat and the wrong food at the wrong times of the day. So we started a new regime. And she's been very good and very supportive of keeping me in control and, you know, not letting me go out in the kitchen and have that Mars bar and Twix and, you know, chocolates. Which I try not to, but we all get tempted from time to time. So if I do eat too much, she's, you know, like a schoolteacher, “Come on, you know, you've got your test, your clinic appointment in a few weeks time.” So she's very good and very supportive.
And you mentioned that your, your wife is very central?
Extremely supportive. And the children, yes, now they're older. When they were younger, it didn't make any difference. But, yes, if, you know, daughter cooks a meal she's quite strict on me. But, yes, the wife and family are very supportive. And I think, you know, if I was one of these people that lived on my own, I don't know if I would, I love curry and things like that. So I could, I think I could live on it every night, but that wouldn't do my diabetes any good I'm sure. But… No, she is very good in, in stopping me doing things I shouldn't be doing. Eating-wise, yes [laugh].
So do you think it's because of her that you've kind of managed to control your diet?
It, it's helped considerably, yes. If I cook a meal, she hurt her back last year, and for me to cook a meal was a nightmare, you know. And if I had to cook a meal for myself it would be, I'd perhaps do some potatoes, but it would be mushy peas out of a tin and a pie or something. Whereas [my wife] will do all the fresh vegetables. Now, you know, I'll eat the vegetables if they're on the plate, but I wouldn't prepare them myself. Yes, so I think she, she helps control me a lot, keeps me in, out of trouble anyway. I'm not saying that because she's not here either.
Malcolm recommends support groups because they can help people feel they are not alone.
And you're obviously very active in the diabetes support. Can you talk in some detail about your experience of being part of a support group?
Yes, well, it started off, there again it was the practice nurse that said, “Oh, what you ought to do, there's Diabetes UK, and you can subscribe to the Balance magazine and join Diabetes UK.” Which I did. I got the magazines and found it quite interesting. And in the magazine it said about local support groups. And I thought, “Well, interesting, I'll go along and see what it's all about.” Went for a couple of years and very interesting. They asked me if I'd like to be on the committee. So I thought, “Yes, that can't do any harm.” So ended up on the committee. Then the chairman retired and they said, “Would you like to become vice-chairman?” And I said, “Well, yes, that'll be all right.” And looked at the chairman, who was then, who, the vice-chairman then became chairman. And unfortunately about six months later he died. So I ended up chairman. Which is not what I wanted at all, but I suppose I do enjoy it.
We organise six events a year, three south of Bristol, three north of Bristol, to try and encourage people to come along. It's not like Alcoholics Anonymous, not that I've ever been to Alcoholics Anonymous, where you've got to stand up and say, “I'm a diabetic.” But most people there are diabetics or carers of dia-, people with diabetes or people who work in care homes and doctors and nurses. They all come along because we get quite prominent people to do talks. And then it's question and answer. So it's very low key, very friendly. It's free. And we just encourage people to come along.
But what, if, if you imagine somebody asking you the question, “What, what would somebody get from a support group?”
Sharing experiences, realising that you're not on your own. Either the chance to talk to a consultant, a professor of diabetes, which you wouldn't normally do, but more importantly, to talk with other people on, either on just a one-to-one basis or in a little group. And I'm sure the problems that those, you know, one person has got, everybody's got, you know. So it's just a feeling that you're not on your own. You don't have to go. You can go to some meetings, you can go to other meetings. It's just to, to help with support and awareness, and to meet other people with diabetes that have got all the problems you've got. So you, you think, you know, “I'm not alone here.”
Malcolm describes the high carb, low sugar, low fat diet that seems to work for him.
So can you describe your diet in some detail?
It's a normal healthy diet. I have gone… I swing from being ultra careful to perhaps not being as good as I ought to. But I don't, there's no fad foods with me or sugar-free jams and, you know, all the rest of it, just a normal healthy diet. Weetabix or Shreddies or something for breakfast. At the moment because I'm on a diet, I have two apples and a banana for lunch. And then the wife cooks a good wholesome evening meal. I tend to you know, I'm one of these people that I can't have one digestive biscuit, I have to have half a dozen you know. So I try not to, you know sneak out into the kitchen at sort of 9 o'clock at night. But yes, a normal healthy diet. Alcohol - I love red wine - but I only drink that on a weekend. I don't smoke. So, yes, so there's no special diet, just a healthy diet that we should all eat. High carbohydrate, low sugar, low fat.
So I mean if you could just imagine somebody who maybe doesn't know this, then how would you describe this high carbohydrate/ low sugar diet?
Bread, pasta, potatoes, boiled potatoes are okay. Cut out all the fried food, the crisps and the chips, and all the sugary, you know, saturated sugar food. So yes, but there's no need to go out buying sugar-free this and sugar-free chocolate and all the rest of it. Because it's, generally if it's sugar-free it's full of fat anyway. So, yes, and takeaway foods are a once-a-month treat. But yes, cut out the fats and the sugars, that's the main thing. And plenty of pasta, potato, bread, in the right proportions. And obviously five pieces of fruit a day. Which in fact I do quite enjoy fruit. I eat too many bananas. I should only have one banana a day, but I'll sometimes have two or three. Because they're quite high in natural sugar. Which I didn't realise till a while ago, so I was eating a banana thinking I'm doing the right thing, but in fact it wasn't.
Malcolm found out he had diabetes soon after his optician spotted that he had problems which...
Right, basically I was diagnosed when I was 39, back in 1992 roughly. Went to an optician's for a routine eye test. Had no history of diabetes in the family or anything like that. I'd had a motorcycle accident a few years before and damaged my eyes, so they recommended having a follow-up, you know check. And didn't wear glasses, you know, never needed glasses. And the opticians were starting to go, 'Mmm, yes…' you know, and 'We think there's a problem with your eyes...' you know, 'Take this letter to your doctor.' Didn't think anything of it, having had the motorcycle accident. The doctor did some blood tests.
I didn't know anything about diabetes [cough] at all. Said, 'Right, you need to go to, and see a consultant.' And that's when they started talking about diabetes, and sort of frightened the life out of me completely. And what it is, I had retinopathy, which is damage to the back of the eyes. Because I've learnt since that someone with diabetes has had it, type 2 diabetes possibly for up to seven years. So, yes, I'd possibly had it for seven years.
You know, so had the, the diabetic retinopathy, was overweight, so, and I was sort of middle-aged, so it was all the classic things. Was tired, you know had a young family, busy job, so you tend to think, you know, that's all [understandable]. But looking back I had all the classic examples of thirst, going to the loo a lot, tiredness. So after, they didn't need to do anything to my eyes because it was only a mild case.
Malcolm explains how the amount and strength of medication he takes has increased over the last...
Both. I originally started on gliclazide, one in the morning. I'm now on one in the morning, one at night. I then started on metformin, one in the morning, one at night. I'm now on two morning, two lunchtime and two at night. And I've just started on pioglitazone, one in the morning. So, yes, the quantities, the amount of the drugs and the strength of them has increased over the last fifteen years, you know. So, very slowly but very surely, just to keep the blood sugars back to where they should have been. So, yes.
And the more recent change has been how long ago?
Two weeks ago. I've had the pioglitazone. They've introduced that one into it. So, because they increased the metformin and the gliclazide, and that really didn't have the desired effect. So, yes, you know, I think they call it tri, you know, tri something or other, so, you know, i.e. three, triple dosage. So, yes.
It didn't have the desired effect meaning it didn't'?
Didn't bring the blood sugars down. Yes, because they did a HbA1c, which gives them the average. And it had come down, but not, it was still at 10. So, yes, they needed to put another drug in there to see if that's going to work. So, and hence I have to go back for another blood test and they'll see then if it's working or not. So, I think it is, because the daily checks I'm doing have come down. So, you know, and that's, the daily checks you can do your with your blood meter, that's not an accurate thing, not like the HbA1c that they do. So, yes. But it gives you a good idea.
Malcolm explains how important it is to keep glucose levels balanced and describes what he does...
Yes. Basically I have my breakfast about 7 o'clock, take my medication, go off to work. I tend to have my lunch, apples, fruit, might buy some sandwiches, by about half past 11. Because by that time the food I had for my breakfast is wearing off, and the tablets are still kicking in and they lower my blood sugars. The gliclazide and the metformin will lower the blood sugars. So that's when you need to eat to bring your blood sugars back up. Also about 4, 4.30 in the afternoon they tend to - if I've been, had a stressful day at work or exerted myself, lots of running about - they tend to drop a little bit then. So then I've got some glucose tablets in the car, which I take and that will bring the blood sugars back up again.
And it's all about balance. Keeping them between 4 and 7 is the ideal. If they drop down to about 3, that's what I call a bit low. And generally you don't get a problem so much when they're high until, unless they're up round the 20's, and then that's the equivalent of being down to 3 the other end of the scale. So you've just got to try and keep them balanced, which is not as easy. It's okay if everything's going alright, but if you're ill, stressed, you know, one reason or another, they can either drop or go up. That's when you do a blood test just to check. And sometimes you feel unwell and it's nothing to do with the diabetes. You just don't feel very well. Other times, yes, you've got a low blood sugar or a high blood sugar.
How do you know when you've, when you need to check?
Tingling lips, you know. And that, that's, I'm lucky. A lot of people don't get any symptoms at all, especially those that are injecting insulin, and they can just collapse on the floor. I'm lucky. One of my first signs is my lips tingle. Don't know why, but luckily they do, and then I think, 'Ah.' You know, I haven't eaten for a while, I've been rushing round at work or whatever. And I'll just take a couple of dextrose tablets or a glass of milk with some sugar in, and that brings them back up. But in about twenty minutes you feel perfectly okay.
Malcolm had a mild case of retinopathy which was found at a routine eye test.
Having diabetes has made Malcolm determined to keep doing the things he's always done including...
No. Up until two or three years ago I used to do an annual Action 100 as a charity, and it was a cycle ride from Bristol Temple Meads station to Chobham rugby club, which is 115 miles. And I cycled that in a day, 8 hours 15 minutes. So, and that's with my chest problems and the diabetes. So, no, it's not stopped me doing anything. Almost to the, the other, taking it to the extreme, I think it's made me do things, you know, because I won't give in to it. And so, yes, I've done these charity cycle rides. As I said, I haven't the last couple of years because I've been ill. But, no it's forced me into perhaps doing things I wouldn't normally have done, just to prove you can do it. I think I'm quite stubborn.