Speaker Key:

CB           Chantal Boyle

AS            Ashwin Soni

VO           Voice Over

00:00:00

VO

Welcome to The Sunflower Conversations where we explore the Hidden Disabilities Sunflower and its role in supporting people with non-visible disabilities.

 00:00:20

CB     

Welcome to The Sunflower Conversations. I am your host, Chantal. And today, we are going to be talking about diabetes. According to research led by Imperial College, the total number of adults living with type 1 or type 2 diabetes in the world has surpassed 800 million, which is quite a phenomenal number. Joining me today to have a chat about type 2 diabetes is Ashwin Soni. Hi, Ashwin. How are you?

AS       

I'm good. How are you?

CB      

I'm very well, thank you. And very grateful for your time today.

AS       

You're welcome.

CB      

Ashwin has type 2 diabetes, as I mentioned, and he's going to share his personal lived experience. Before we get into some of our chit-chat, I'm going to give a quick visual description of myself. I am a female. I am, I can't think of the word, in my midlife. Middle-aged. I’m middle-aged, that's it. I've got brown skin. I've got long, brown, curly hair. And I'm wearing a red top and a red cardigan. Ashwin, could you just give a visual description of yourself, please?

00:01:32

AS       

Yes. I'm Ashwin Soni. I’m 76 years old. I am a British Indian. I also have brown skin, white hair, for my age.

CB      

Thank you. Can we start off? Can you explain? How does type 2 diabetes differ from type 1?

AS       

The primary cause of type 1 is an autoimmune condition. Whereas type 2, it's not autoimmune condition where body's immunity system mistakenly attacks and destroys the insulin production cell. Whereas in type 2, that's not the case. In terms of insulin production, in type 1, little to no insulin is produced. Whereas in type 2, insulin is initially produced, but the body can't use it effectively. Production often decreases over time and as you grow older.

The onset of type 1 diabetes is usually rapid and often diagnosed in childhood or young adulthood, but can occur at any age. Whereas type 2 is usually gradual and often diagnosed in adult life, over 40 to 45 years, though diagnosis in younger people is also becoming more profound. And prevalence is far less common of type 1 diabetes, affecting about 5% to 10% of the population with diabetes. Whereas type 2 is much more common, affecting about 90% to 95% of people with diabetes.

And in type 1, the treatment requires lifelong taking of insulin therapy. Injection of insulin or pump and to replace the insulin the body cannot produce. Whereas treatment for type 2 is managed initially with healthy lifestyle and changes. An oral medication can be prescribed. Insulin may also be required if it can't be brought under control. On the prevention side, type 1 cannot be prevented. Whereas type 2 can be brought under the prevention regime.

00:04:45

CB      

Insulin is not a first port of call for type 2, whereas it would be for type 1?

AS       

Correct. In my case, just to give you a practical example, I take metformin and I also take dapagliflozin as well. I take two medications to control my type 2 diabetes.

CB      

Can you explain what some of your symptoms are and how it began?

AS       Yes. Core symptoms are, basically, I felt tired and I had poor night's sleep and went urination regularly. Not just at night, but also during the daytime. And I started to get dry skin. And I felt very uneasy and not up to myself normally. The most common symptoms experienced are direct result of the high blood sugar level, glucose level, as the kidneys try to flush out the excess sugar through urination. Increased thirst was one. Then frequent urination was the next one. And feeling very tired was another one. And I had patches on my skin.

CB      

Dry patches or?

AS       

Itchy patches. Dry. And also, reddish. And others, subtle and gradual signs, was blurry vision, slow healing after cuts or sores and frequent infection.

00:06:59

CB      

Really?

AS       

And tingling or numbness in my feet.

CB      

And did they all come at once or was it gradual?

AS       

No, they were there, but I ignored them initially. My doctor kept on saying to me that I was getting to be pre-diabetic, so pay attention. And we were taking regular blood samples and I was initially resisting having to go on medication or treatment. They put me on a course. I went on a course and learnt a little bit about what diabetes is all about and how I may control it and so on. But then I resigned to the fact that it's there, so I've got to tackle it head on and do something about it.

CB      

But how long have you been living with?

AS       

It's about four years now. Initially, it was a big shock and I started to think about people who had diabetes and how they have suffered and how they take insulin and stuff. My brother-in-law had diabetes. That was type 1, though. And he was very careful with everything. But still, he was frail and sometimes finding it difficult to manage his diabetes.

CB      

I think with diabetes type 1, you have to test regularly to make sure that your insulin levels are at the right point. Is that the same for diabetes type 2? What's the monitoring like?

AS       

I test it every day.

00:09:15

CB      

You do?

AS       

Yes. I have a quick pin and monitor like that.

CB

And Ashwin is holding up, it looks a little bit like a Tamagotchi game, but it's not. It's a digital device with a reading screen on it. And in the left-hand side is a wand.

AS       

Yes, that's the pin to prick your finger. And I do it every morning.

CB

Sorry, can you just say that? Because it froze. You do that every morning?

AS       

Yes. That is my blood sugar level indication for me every morning. And I use that as a means of controlling my diabetes on a regular basis. I keep a chart of how it has been.

CB      

And do you have to keep an eye on that yourself or do you take the chart to the doctors and they assess [overtalking]?

AS       

Yes. When I have a review with the diabetes doctor or a nurse, I take the chart with me. We talk about the results from when it's done at the hospital every six months. And we review the results. And so far, they've been in a good shape. After last Christmas, I found it very difficult to bring it back under control. And that's when the nurse recommended this new additional medication.

00:11:05

CB      

And do you think, after Christmas, your diet over that period had affected your levels? Is that what you think the result of that was?

AS       

That's right. I was a bit relaxed during Christmas period last year and had a little bit of more chocolate and puddings and things like that. And then I found it very difficult, through January and February, to bring it under control.

CB      

And it's not even necessarily excessive amounts. It's just more than what you should be having because of your diabetes?

AS       

Yes. And when I spoke to the nurse, she said, don't blame Christmas for it. I think even if Christmas had not been there in the middle, you would have still gone through this experience of a few uncontrollable periods. This new medication that I've been taking has helped me quite a bit. I take that in the morning and metformin in the evening, before bed.

CB      

Say, for example, if you decided tomorrow, I'm not taking any more medication, either of them, are there dangers associated with type 2 diabetes and not managing it?

AS       

I don't know. I haven't experimented that. But I guess if I stop it, then it will go out of control.

CB      

Because I think there'll be a problem with maybe the arteries becoming blocked, which could then cause greater health conditions?

AS       

It can do. And that's the risk I don't want to take. I'm tempted to go through a period of not taking anything to see what happens.

CB

Really?

00:13:00

AS       

But I haven’t done it yet.

CB

Maybe don't do that. We don’t want anything bad to happen to you, Ashwin.

AS       

See, my nurse and my doctor would not recommend it.

CB      

And to anyone listening, we just have to say, please, follow…

AS       

If I do it, I'll do it on my own volition, really.

CB      

For anyone listening to this, please follow the advice of your healthcare practitioner. 

You are listening to The Sunflower Conversations. Remember to hit subscribe. 

CB

Has type 2 diabetes affected your life socially? You said that you've only had it four years?

AS

Yes, it has. All my portions are smaller. Whereas before, I was taking this much rice and maybe eating three, four chapatis. I have this much rice and maybe no chapatis. Or if I have a chapati, I don't have rice. I'm a vegetarian, mainly. I try to eat sensibly. Lots of proteins through lentils and eating cheese and so on. I eat eggs, so I'm okay. But many vegetarians don't even have eggs.

CB      

Vegans.

00:14:28

AS       

I used to be a meat eater 15, 16 years ago. And I'm a Hindu. And in our religion, eating of meat is forbidden. As I was taking charge of building a Hindu temple 15, 16 years ago, it was one thing I decided that I had to be quite honest with myself and I gave up eating meat. As soon as I did that, my iron level in the blood started to come down quite a bit.

CB      

That's interesting. You've actually been very aware of food and the effects it has on your body, really, probably all your life, if actually this is part of one of your religious beliefs?

AS       

Absolutely. You have to be sensible. In a week, I'm quite strict. Three or four days or even five days, six days, I may take a holiday one day in a week and enjoy things that I would normally not eat, like a cake or a chocolate or something like that. But this year, after taking this new medication, my blood sugar level is under good control. Even my A1C tests have been in good order. I have been enjoying chocolates and sweets and cakes and things like that. Not large numbers, but small amount.

CB     

In terms of where you go for a family function or with friends, do you have to pre-warn them about the amount that you can eat and the types of food that you can eat? You've been living with it for four years now. But initially, was that quite difficult for you to have those conversations with people?

AS       

I haven't found it very difficult. What I tend to do is take smaller portions. And if I have eaten too much sweet food, then I make sure I go for long walks and do some exercises that way.

CB      

It sounds like you do a lot of balancing in terms of having a holiday day during the week, in terms of what you're going to eat, making sure you balance out with a bit of exercise?

00:17:22

AS       

And maybe more fasting, if I have to. If my blood sugar level is really high in the morning, I may not have breakfast. I'll just have coffee and maybe a small piece of cheese and that's all. Also, in the beginning, three, four years ago, I went on a keto diet.

CB      

How did you find that?

AS       

That was excellent. It helped me lose at least about eight kilos of weight.

CB      

Wow, that's a lot.

AS       

Yes. And I felt good for having lost that much. All my clothes became very loose.

CB     

[Overtalking].

AS       

And my body felt good. I felt good. It was worthwhile doing. I still carry on semi keto diet as far as is possible. Try and prevent eating lots of carbohydrates. And try and concentrate on eating proteins. And in my case, it's eggs and cheese mainly. I don't eat meat. And lots of lentils.

CB      

It's food that you need to avoid. It’s food which is high in glucose. Is that right?

AS      

Yes, that's right.

CB      

Carbohydrates?

00:18:56

AS       

Carbohydrates. That includes fruits as well. Lots of fruits have high level of carbohydrates. Sugar, honey, they all have very high carbohydrates.

CB

What about rice?

AS       

Rice is very high as well.

CB

Is it?

AS       

Yes.

CB      

Gosh, tiny, little grains. You wouldn't think it, would you?

AS       

Yes. Rice, brown or white, it still is very high in terms of carbohydrate.

CB      

Do you feel like it's important that people around you that you know who have diabetes so they can offer support?

AS       

I don't expect people to support me. I have to inform them that I suffer from this. So please, take it as I am. And if I don't eat something that you think I ought to be eating, then I'm sorry about that, but my health comes first.

CB      

Absolutely, your health always must come first.

AS       

And chapatis are very high in carbohydrates. Rice is very high. I have smaller portions. Instead of three, four chapatis, I have one. And the chapati she makes out of millet flour is also very healthy. I do have that as well, instead of gram flour.

CB       

It's very interesting. It's a nutritional education for me right now.

00:20:30

AS       

In terms of testing, just going back, daily, I check my blood sugar level. Six-monthly, I have A1C test at the surgery. And I have regular screening of my eyes. Because you do suffer from blurry vision.

CB     

Would that affect your driving at all or what have [overtalking]?

AS       

No. But it has got to be kept under check.

CB      

What do you think about the Hidden Disabilities Sunflower as a method of communicating that you have a non-visible health condition, such as diabetes?

AS       

You know what? I got it yesterday.

CB      

Do you like the look of it?

AS       

I received my bag yesterday and I don't know what to do with it.

CB      

The idea is that, say, for example, you were going to a restaurant. Or maybe if you were going for a walk and you were experiencing blurry eyes or something like that, it would just be helpful. Because somebody looking at you wouldn't know that you have a non-visible health condition, like diabetes. If they see you're wearing that and you look to maybe be struggling a bit, they'll know, let me go and offer this gentleman some help because I can see he's wearing the sunflower.

00:21:50

Same as if you go into a restaurant and you're maybe asking a lot about the menu because you need to make sure in terms of, how big is the portions or whatever. Because you need to make sure that you're not going to have foods that will not be healthy for you in terms of managing your glucose. If you've got the sunflower with you, it means that they’ll, rather than think this is a fussy customer, why do they keep asking me all these questions? They'll know that, actually, there is a non-visible health condition. Which will be why you're asking.

AS       

See, I was wondering, do people know about sunflower?

CB      

Some people do and some people don't. We have a membership programme. It started at Gatwick Airport in 2016 and they were looking for a symbol for passengers that could self-identify as having non-visible health conditions, so that the airport staff could give them more support. It started at the airport. And then what's happened is, since then, lots of different sectors of business have joined. They take our training, and then they then all know this is what the sunflower means. 

When a company joins, we ask that 80% of their employees watch our training video. And then it's a ripple effect, really. If I work somewhere and my company becomes a member, then because of the statistics globally, one in six people has a disability. And we talk about 80% of that being non-visible. It means that everybody, in some way during their life, will be touched by a disability. I can relate that to my family.

AS       

I wasn't aware of it. Now I've become familiar with it.

CB      

And now if you see somebody wearing it, you'll know. If you go to Gatwick, which is probably your closest airport, you'll see when you go to check in and what have you. And I think also at the Border Force, you'll see the sunflower sign. You'll start to notice it now. Do you have a message for anyone who's been diagnosed with type 2 diabetes and is uncertain about what it means for them?

00:24:13

AS       

Yes. Don't panic, number one. Face it. Take it that this is something that's happened to you. Accept it and learn about it, like I did. Ask questions at the surgery and the diabetic nurse. Go on a course on diabetes. Learn more and more. And follow a diet that is low in carbohydrates. And like I do, maybe monitor your blood sugar level daily, if possible. If not, then as often as you can. But don't give up. Enjoy life. Do exercises. Go for walks and do some weightlifting, if possible. And try and live a normal life.

CB      

That's lovely. Really, really great.

AS       

And in our case, in Crawley, there is a diabetes club. Go and join diabetes club. You will learn a lot because there are loads of people like you in your locality and you can learn best practices from them. You can exchange experiences with them. Because we meet monthly and it's an excellent forum for exchanging ideas and opinions and views and listen to experts and so on.

CB      

Is this a community group?

AS       

Yes. It's not a big thing yet. But, hopefully, it will grow.

CB      

That's what I hear over and over again, that just getting a connection with another person who's going through a similar experience is so valuable. That's brilliant. Thanks, Ashwin. Very much appreciate your time.

AS       

You're welcome. Take care. Bye-bye.

CB      

Thank you. 

VO

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner. If you enjoyed this podcast, please share it. 

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00:27:06