Mike Kendall is a Bristol, England born and raised graphic designer who lives with his wife, two teenage daughters and, as Mike describes it, “a very hairy dog”. Sounds normal enough, right? But Mike’s story doesn’t end there. In fact, what makes the 47-year-old designer special is that he shares his story through his informative and insightful blog, Everyday Ups and Downs, which he and his wife, Jane, started together in 2010. Diagnosed with Type 1 Diabetes in 1991 at the age of 21, Mike and Jane (whom he met and married in 1994) had a dual incentive for starting the blog. “Mostly I think we are probably writing for ourselves, to understand how we feel about diabetes a little better,” writes Mike. “But we also hope that by sharing our experiences we might encourage others living with or affected by Diabetes themselves.” Everyday Diabetes had the good fortune catching up with Mike at his home in Bristol for this interview.
Your blog is called “Everyday Ups and Downs”. Can you talk about the name and what it means to you? Naming the blog was a strange thing. It didn’t really get all that much thought if I’m honest, and mostly boiled down to thinking of something and then seeing if the domain names were still available! Everydayupsanddowns was far, far too long, of course. But we liked the way that the meaning can be swapped and changed between challenges which are ‘everyday’ in that they are completely normal and ordinary, nothing to get too bothered about; versus the sense in which ‘every day’ can reflect the relentlessness and constancy of facing these battles every single day without a break. It’s nice to recognise the ups as well as the downs of diabetes too. Living with type 1 isn’t all bad, and has meant I have connected with some absolutely amazing people from all over the world and taken on some challenges I probably would not have done if I didn’t have it.
It’s nice to recognise the ups as well as the downs of diabetes,too. Living with type 1 isn’t all bad, and has meant I have connected with some absolutely amazing people.You and your wife started the blog so you could write about our own experiences living with the condition while also writing for others. What are some of the highlights of the journey since you started blogging? Yes, when we started everyone in the family wrote from their own perspective, but as the years have passed it has really only been me that has kept finding things to say. In those early years it was very, very interesting to read those different points of view. However much you think you talk and communicate about these things, people express themselves very differently when writing stuff down. It really helped me to understand how my diabetes was affecting other people in my family. I’m not sure if I ever expected anyone else to stumble across our ramblings – but it is incredibly rewarding each and every time someone responds to a post and says it has resonated with them, made them smile, or helped in some way. When first diagnosed, were you quick to change your lifestyle? Things were very different when I was diagnosed, at aged 21 while away at art college. From the outset approaches and changes were presented to me in terms of ‘what you have to do now’ rather than as a complex set of options and strategies to enable me to carry on living exactly as I had before. I was given set doses of premixed insulin, based on a conversation which assessed my general diet. I then was given a carb count for breakfast, lunch, evening meal and three predetermined snacks at set times of day that could not be omitted. It was a very rigid structure, and not one I stuck with for very long, but I am grateful that it introduced from the very outset the concept of measuring and monitoring carbohydrate intake in order to match insulin doses. It made transitioning to more flexible insulin regimens easier later on.
I think if I had stayed on mixed insulin for much longer that system would have become too much of a straightjacket and I would have rebelled against it.What was the most difficult adjustment? I think if I had stayed on mixed insulin for much longer that system would have become too much of a straightjacket and I would have rebelled against it. It was very much based on you fitting your life around diabetes management rather than the other way around. If you missed or delayed a meal or snack you would end up in bother, and every meal and snack had to meet its fixed carb count whether that was not enough or far too much. Looking back on my life with diabetes as a whole I guess the most difficult adjustment for me has been the thinking required around food. I can’t just eat something if I fancy it, I always have to consider the impact on my blood glucose management. However intently or otherwise I am managing my diabetes at the time there is never ‘just eating’ any more. Do I want to eat that? Can I manage the insulin effectively? What happened last time I ate that? What will it do to my BG levels? Is that potential effect worth the pleasure the food or snack might give me? Am I better off making a different choice? Do I need to wait between a dose and eating? If so, how long? What are my BG levels doing right now? Do I need to eat something, even if I’m absolutely stuffed and really don’t want to (in order to head off an impending low). Don’t get me wrong… I still love food and eat pretty much whatever I want most of the time, but it’s always viewed through the filter of my diabetes. That’s just how life is.
However much you think you talk and communicate about these things, people express themselves very differently when writing stuff down. It really helped me to understand how my diabetes was affecting other people in my family.What do you think about the state of diabetes in general as far as how people approach it and the efforts by the medical industry and the government to fight the disease? I don’t think there has ever been a better time to be diagnosed with type 1 diabetes. I wouldn’t wish it on anyone, and it can be very frustrating and difficult to live with, but modern treatment techniques and technology make near-normal blood glucose management tantalisingly achievable…well, some of the time anyway! Plus, it is perfectly possible to live a long, exciting, healthy life with type 1. Diabetes doesn’t have to hold you back doing anything. What are some of the more exciting developments you see out there in the area of treatment? Technology and research is moving at such a pace it is hard to keep up. Sensor-augmented pump therapy is improving year-by-year and is beginning to automate some of the management decisions based on continuous glucose data. We are still some way from a full ‘artificial pancreas’ (though every device launched in the past 5 years has been billed as such) but there are significant steps that are being made. And with something as fickle and contrary as type 1 diabetes it is a huge change to have a device proactively monitoring and safeguarding blood glucose management 24/7 in a way that you simply cannot when ‘flying manually’, particularly overnight. There are great strides being made in all sorts of areas: stem cells, nano-encapsulation of transplanted beta cells, smart insulin, non-invasive continuous glucose monitoring, open-source data-sharing and bio-hacking initiatives such as Nightscout and DIYAPS and, of course, the ever-elusive cure.
Don’t get me wrong… I still love food and eat pretty much whatever I want most of the time, but it’s always viewed through the filter of my diabetes. That’s just how life is.What advice would you give someone newly diagnosed? First off, take a breath. Allow yourself to feel rotten about this – some people liken it to grieving and you will most likely face each of those ‘5 stages’ in the coming months and years, several times, and in no particular order. But don’t allow yourself to get stuck in the ‘anger’ or ‘denial’ stages for too long. It may not feel like it right now but this *is* something that you can successfully manage. Just take one day at a time – test lots, count carbs, carry sweets and keep asking questions. See if there is a structured education course that you can access to help you learn about diabetes management, dose adjustment, exercise, alcohol, illness, self-monitoring and what to do with the results. Understand that whatever levels or targets are mentioned to you, YOU have to decide what you are aiming for, in agreement with your clinic, Dr or diabetes team. This is your diabetes and you will get to know it better than anyone else. Aiming for something because ‘they’ tell you to (whoever they are) is a shortcut to feeling frustrated. You have to own your targets and ranges. Start from wherever you are and try to make small improvements to protect your long-term health. See if there are any gadgets or gizmos that might help your day-to-day management, and how you can go about accessing them. A different insulin pen, a smart meter to help you spot patterns or suggest doses, a smartphone app or two to log results or help estimating carb values in meals, an insulin pump or CGM. Each person will have their own unique diabetes toolkit that helps make living with T1 just that little bit easier. Connect with others – either face-to-face at a local group, or online through forums, Twitter, Facebook or blogs. Living with diabetes is tough, but it’s even harder if you are battling on your own. For everyone there’s a little corner of the internet that can provide support, encouragement and shared experiences. Is there a particular book you think everyone should read? Tricky. I have so many I could suggest. Diabetes-wise it is probably ‘Think Like a Pancreas’ (which is odd as I have still not read the actual book, but everything I have seen and read by Gary Scheiner, along with everyone else’s recommendations make it my go-to book to recommend). For a novel you could do a lot worse than ‘A fine balance’ by Rohinton Mistry or ‘Good Omens’ by Neil Gaiman and Terry Pratchett which I am currently halfway through.
We highly recommend you take a spin through the archives of Mike and his family’s wonderful blog at www.everydayupsanddowns.co.uk