Diana Maynard from Sheffield was diagnosed with type 1 diabetes in January 1980, noting to us upon sharing this: “ooh, just realised it’s been 40 years! I’m not one of those people who tracks these things!” Diana has faced some hugely challenging hurdles on her journey with this condition, including facing some serious complications, however, her attitude to life is something that we can all learn from which we hope to share a little insight to in this week’s DiAview. You can follow our T1D ‘Princess Diana’ on Twitter at: @dianamaynard
1. Diana, you are an inspiration. Let’s start with that! Each Saturday morning you go and take on a 5k Park Run, along with other running activities – can you share with us a little about your passion for running and what enjoyment you get from this?
DM: “Ha, I wouldn’t actually say I’m passionate about running as such, more that I’m passionate about being active generally, especially outdoors. Though I also do up to 13 gym classes a week. That sounds a lot, but one of them is only a 30 minute fitness class, and some of the yoga ones are more relaxing than energetic. However, I run because it’s an easy way to get and stay fit in a short time and anywhere in the world. I travel a lot for my job and it’s not always easy to get to a gym or to find the time for a whole day hiking in the mountains, but a 5k run can be packed into any spare half hour. Also, I’m super competitive (with myself as much as with anyone else) so I enjoy doing challenges and events where I can see my time improve. I’ve done a few 10k races and am planning my first half marathon soon. I do Park Run because I’m not so good at motivating myself if there isn’t a specific time and place I need to go. It’s easy to think “I’ll go later” if it’s cold and raining, but with Park Run there is no ‘later’.”
2. And with type 1 diabetes, following on from that, how do you go about managing your blood glucose levels on a Park Run morning – from timing of insulins, types of meals to checking your levels before, during and after?!
DM: “It’s been a bit of trial and error, but using a Libre has helped a lot in figuring out blood sugars around running. Unlike many people, I don’t have any kind of Dawn syndrome, so I definitely need carbs before I exercise first thing in the morning. My current routine for Park Run is to eat a bowl of porridge (and a coffee – even more critical!) around 8am, then at 8.30am I leave the house for a slow run of about 3k dowhill to the park. Just before the run starts at 9am, I have an energy gel unless my blood sugar is above 10 mmol/l, and this generally seems to hold my levels at around 5mmol/l throughout. After the run, I then walk/run back home the 3k back, which is almost entirely up an extremely steep hill. I’ve never managed to run the whole way yet, but one day! This helps to stop my blood sugar spiking, which it has a tendency to do after exercise. I then watch my levels closely on the Libre, and usually need a small bolus of insulin once I get home to prevent them rising. I always carry at least one energy gel in a running belt (along with my pump and Libre scanner) when running. My friend brought me back this amazingly cheap one from China and it does the job perfectly.”
3. You have lived with this condition a little while, it is fair to say. Can you talk us through some of your earlier memories in living with type 1 diabetes you have, the emotional challenges faced and impact it had on you during a younger age?
DM: “My dad had type 1 so I was used to the concept of diabetes from an early age, but didn’t really know much about it beyond the fact that it meant insulin injections (with a massive metal and glass syringe) every morning, and sometimes needing sugar urgently. I actually thought it was quite cool and exciting when I was diagnosed, especially the injections part! Back in the 70s, my family were the type who didn’t discuss medical problems or complain – you just got on with things and certainly didn’t tell anyone you had diabetes. So I grew up hiding it from even most of my closest friends, and trying to be normal, which wasn’t really a good idea. I was extremely shy anyway, and hated being different. There was no home blood testing and with one mixed injection a day, it was pretty impossible to get any sort of control, but I avoided major hypos so thought I was doing pretty well really! It’s amazing to think I’d go out for the day climbing mountains or off on my bike with literally just a handful of glucose tablets in my pocket, and not worry!”
4. You have also seen quite a rollercoaster of changes in diabetes healthcare during your time so far with the condition! Can you share a little bit on what differing medical devices you have experienced? From glucose testing to insulin management? And what this has meant for you personally?
DM: “I started on one mixed injection a day of short and long-acting insulin in a massive metal and glass syringe which you had to store in surgical spirit. To this day I can’t stand the smell of it. We had only rudimentary urine testing where you had to mix urine and water in a test tube, add a fizzy tablet and see what colour it turned. Just like a chemistry experiment! Gradually, urine dipsticks came in (I remember the doctor gave us some as a special treat when we went camping in France, before they were readily available. Then eventually home blood glucose testing came in, and disposable syringes, and finally, when I was a student at university, insulin pens and MDI. I was reluctant to move to MDI and more injections, as I thought it would be a hassle when I was out and about at university, but I did find I got much better control. I then got an insulin pump in the late 90s, long before they were widely used, and it changed my life forever as for the first time I was actually able to get good control. And then CGM and Libre came along, and I was a bit reluctant at first to have something else stuck to me all the time, but I loved the Libre from the first day! Now I can spot rising and falling blood sugars much faster and prevent problems before they occur.”
5. Diabetes complications. This is a difficult topic for many to talk about – and there are many differing forms of complications, which can impact you emotionally, physically and psychologically. Can you share with us about the complications that have progressed in your life and how you have had to adapt to working with them?
DM: “So I developed retinopathy when I was in my mid-20s, halfway through doing my PhD in Manchester. I was extremely unlucky in that even though they caught it very early, it progressed extremely fast despite having masses of laser treatment. At one point they told me I would almost certainly lose all my sight in the next 6 months as they just couldn’t save it. I think I was just very unlucky – I’d struggled for a long time to get good control, just because there weren’t the tools and support available, and so I’d sort of given up trying. The one thing that helped me deal mentally with sight loss was rather unexpected – I’d been advised to go to Braille classes so I went along to a few sessions. The Braille didn’t help me at all as I was rubbish at it, but most of the people there were deaf/blind, and I realised very quickly how lucky I was that I still had my hearing. I also had great support from friends, who mostly just made jokes about me dragging guide dogs up to the top of Everest. I also had a friend (one of my former ballroom dance partners) who sadly got bone cancer and had to have his leg amputated. I thought I was so lucky to still have the use of my legs, but what I didn’t realise till later was that he thought he was so lucky to still have his sight, so we kept each other going without realising it. I’m now registered blind but have a lot of useful sight and still do things like running, cycling (very slowly!) and climbing mountains (also very carefully!). I try not to let anything stop me doing the things I want to do, but sometimes it can be challenging to find ways around the problems.”
6. What advice would you give to others facing any type of diabetes complications?
DM: “Get yourself into the best shape you can to give yourself the best chance of both preventing problems and dealing with them. Good blood sugar control, but also watch your blood pressure, and try to stay fit and healthy and eat sensibly. Boring I know, but it really will help. It’s also critical to try to maintain a positive attitude. There may be things you can’t do any longer, but there will almost certainly be things you can still do. Other than driving and playing certain sports, there are very few things I can’t do – even if in an adapted way – as a result of my sight loss. When my dad lost both his legs in his 70s through diabetes complications, we drew up a list of all the things he could no longer do as a result, and the only thing he could think of was skiing. I pointed out that he had never skied in his life, and that actually he could go paraskiing anyway. Second, do your research and ask for help. These days we have access to so many resources for all kinds of disabilities – sometimes you have to be pro-active in finding out what’s available though.”
7. What advice would you give to others who are concerned about their condition and about one day facing a complication?
DM: “Complications sound very scary, and for most people, sight loss is probably the most scary of them all. But these days technology and treatments are so good that they’re not nearly as common as they used to be, especially with good control. Yes, you might get complications, and I recommend doing everything you can to avoid them, but it’s not the end of the world if something does happen to you, and you’re far from alone. Just take it one day at a time and focus on the positives.”
8. You have climbed Kilimanjaro and, as recent as this Christmas just gone, you went on a cycling challenge in India! Can you tell us a bit about these challenges, and how as a type 1 and someone living with restricted eyesight you rose to these challenges and masterminded your way to succeeding?
DM: “Well I do love a challenge, but most importantly, it’s about pushing myself just a little bit beyond what I think I can do. The feeling of awesomeness when you achieve something you didn’t think you could do is what drives me. Everyone wants to feel awesome, don’t they? But more importantly, I’ve seen how it can help other people overcome their fears. This is why I started my blog about travel, adventure and disability, because people told me how much my adventures inspired them. The cycling trip in India was just a holiday, but Kilimanjaro was a terrifying challenge, not only due to the altitude, which makes it gruelling, but also because with my sight problems I really struggle to see in the dark, even with a very bright torch, and the big ascent is done entirely at night. That night was the hardest thing I have ever done in my life. Since then, I’ve got involved with the charity Action4Diabetics, and organise a 50-mile walk in the Peak District every April to raise money. I’ve taken part in it twice (though last year I had to pull out after only 20 miles due to illness) and will be doing it again this year. It’s incredibly tough, but the sense of achievement makes it all worthwhile. The thing I love most about that challenge is that you can stop at any point, and you see people who think they can walk 10 miles, but they walk 20. Or they think they can walk 30, and they walk the whole 50. I wasn’t sure if I could walk the whole 50 miles the first time, but I managed it in 21 hours (and only one major hypo!).”
9. What is Diana Maynard’s message to the world?
DM: “You can’t control the future or the past, but you can control the present. Get out there and do the things you want to do: obstacles are just challenges to be overcome.”