PETE DAVIES has lived with type 1 diabetes for over 61 years! Gavin caught up with him at the start of 2018 for a #TeamDiAthlete interview to reflect on the many changes he has experienced in health care and his more recent connection to the type 1 diabetes network – and what a difference that has made to his perception of this condition.
1. GAVIN: “There is often an understandable ‘fear factor’ about what exactly Type 1 diabetes means for families, especially those with recently diagnosed children. And yet, here you are with over 61 years of experience, which is a clear reassurance for people! How would you respond about that initial fear factor?
PETE: “I fully understand the fears and concerns which families may have. Of course, in my own mind and living with Type 1 diabetes, there have always been thoughts about the possibility of serious complications, but this has helped and encouraged me to focus more on my control. I feel that one must try to be as positive as possible about living with Type 1, and not look at it as a ghastly disease – more as an obstacle or extra challenge to be dealt with. Aim to live with the condition, not try to fight it or neglect it and most definitely, don’t make it your enemy! You can still have a really wonderful life with Type 1, I assure you.”
2. G: “In those early years for you – if you can reflect back that far – what were the biggest hurdles to overcome, for both yourself and your family?
P: “As a very young kid from the age of two, it was hypos! Being on one, then two injections a day meant having meals at incredibly rigid times. If a meal was 15 minutes late or a snack was missed, I was likely to go hypo – I’ve had so many over the years! The difficulty of testing blood-sugars (urine tests) was a real pain. It was hard to live with and simply so uncool as a youngster. Blood sugar control was challenging for my family, but I was so fortunate to be brought up in a most positive ‘CAN DO’ environment. My dear parents had to sleep with all bedroom doors wide open – as hearing me was the only way they could know if I was hypo. That must have been so, so hard! Thank you, Mum & Dad, for such an amazing start in life!”
3. G: “How was the ‘old approach’ towards testing blood sugars and taking insulin?”
P: “Not good at all! At first, urine testing must have seemed quite exciting, a bit like a science experiment – 5 drops of urine, 10 drops of water, add Benedict’s Solution into the test tube, then heat over a naked flame. The colour change indicated the quantity of sugar in the urine. BLUE was deemed as a hypo but could have been equivalent to anywhere between 0 -10 mmol/l, so you didn’t want to be blue! GREEN was considered “safe” but you certainly didn’t want to be ORANGE either, as it indicated significant Hyperglycemia. Whenever my parents saw BLUE they would give me a ‘treat’ to rectify the low. This meant that we were encouraged to always aim for blood-sugars of over 10mmols/l – horrific by today’s thinking and this continued into my mid-30s. An additional problem with urine testing was that it revealed sugars from several hours earlier, not at the time of the test. It was far from great, but we simply had no other means of coping.
Urine testing gear was a pain in the butt and involved having to carry a jam-jar (to pee into) plus a case with a glass test tube, a glass pipette and other equipment in it. Cumbersome and very delicate.
The old injecting gear was similarly cumbersome. We had to use large syringes with needles about an inch long (also quite thick) which were reused several times, until they became quite blunt and painful. Syringes and needles were kept in surgical spirit and were boiled up every Saturday to sterilise them. It may seem incredible now, but we had to buy our own syringes and needles back in the day!
(Benedict’s Solution Urine Test Gear)
4. G: “With the many changes in technology – particularly in recent times – does it ever feel a bit weird to you now, being on a pump and CGM, knowing how it used to be for you?”
P: “No, I wouldn’t say it feels weird, I just feel incredibly grateful that technology has improved so radically over the years. For me, technology didn’t change much until I was well into my 30s. Almost weekly now, something new crops up and it’s so exciting to see all the advances and new ideas.
I was put onto an insulin pump three years ago to help with my hypo unawareness, but I did manage quite well, for 60 years, on multiple daily injections (MDI). I have recently attended a great ‘Hypo Unawareness’ course and my recognition has definitely improved. I have adjusted well to the pump – not perfect, but great to have it and to be so flexible. The pump did feel somewhat alien to begin with, but I have adapted, and the benefits are significant.”
(How things have changed!)
5. G: “So, is this now the most interesting time to be living with Type 1 diabetes???”
P: “It is fair to say that today is a most interesting time to live with Type 1 – without a doubt! A previous ‘very exciting’ time was when I changed from 2 to 4 injections a day, using the NovoPen and blood test (BM) strips for the first time, in the 1980s. I came home from King’s feeling so excited about not having to test urine and carry all the bulky equipment around. It felt so cool – like having real control at last – though still far from simple in reality! That was the first exciting time for me with Type 1. Equally though, the introduction of the blood test meters and pumps, were both amazing times too.”
Overall though, I have to say that my most interesting time was in June 2014, when I was invited by JDRF, to climb Mount Kilimanjaro. It was the first time I had ever truly got to know other people living with Type 1 diabetes. That probably sounds rather sad and I realise now that I did miss out, big time for over 58 years! Incidentally, I used a CGM for the first time on Kili, and it proved to be such an amazing help. Exciting progress indeed – magical in fact!”
6. G: “Yes. You’ve become a bit of a DiAthlete yourself in recent times! Tell us about that Kilimanjaro trek?”
P: “Kilimanjaro was such an unbelievable experience – totally amazing! There were 19 of us, all of different ages and backgrounds but we had one big thing in common -Type 1 diabetes. We clicked from the moment we first met to train on Snowdon – it was so brilliant to meet and work with all these amazing guys! Before that, I was not into social media, and had never realised that amazing groups like DiAthelete, even existed. I might have met other people living with Type 1 diabetes, had a chat for 5 minutes, but never kept in touch. Meeting others in recent years has, without doubt, been the most significant thing to change my whole outlook on living with Type 1 diabetes.
Returning to the continent of my birth to climb the World’s highest freestanding mountain, was so exciting but extremely daunting. It was superbly organised by JDRF UK and was a marvellous achievement for us – climbing to almost 6,000m. Wow, what a buzz! My endocrinologist was chief specialist on the trek and he later did some investigations which indicate that I am probably the person who has lived for the longest time with Type 1 diabetes (58 years back then), to have climbed Kilimanjaro.”
G: “You’ll have to go back and break your own record then, Pete!”
P: “It has crossed my mind many times Gavin, please don’t encourage me too much, or I will!”
7. G: “Last year, to mark your Diamond Jubilee of Type 1 diabetes for living with it for over 60 years, you set off to do the Highest Trek in Peru! How did that go, and how does trekking impact your blood sugars?”
P: “Yes, in doing the trek to raise money for both JDRF & Diabetes UK, I also marked my 60th Diaversary. It was such an exhilarating challenge along with 13 others including, Sue, my lovely sister. Louise Barrington (a fellow Type 1) also took part and it was marvellous to have her company and to have someone there who truly understands the challenges of Type 1. This hard trek summitted at 5,200m where the scenery and colours are totally stunning – quite amazing! I so loved Peru and wished I had booked to stay for longer and see more.
In preparation, I worked hard, for many months, to be as fit as possible in advance. Once the assent began, we needed to walk extremely slowly to let our bodies acclimatise properly – such a vital thing! I reduced my insulin basal rate by 90% on the summit day, but typically made 80% basal cuts. When starting out in training, I cut the basal by about 60 or 70% in the local hills and found blood sugars were still dropping – so cut it even more.
I had no severe hypos in either Peru or on Kili, just a few minor low blood sugars – and a few high ones as well. I felt pretty well controlled overall. On Kilimanjaro however, my blood sugars briefly soared at over 5,500m altitude. Initially, I was terrified that my insulin might have frozen on the overnight summit climb in sub-zero temperatures, despite having insulated it so well. I found myself at almost 30 mmol/l – I was extremely worried! However, once we began our decent and after a significant correction dose, I saw double arrows on my CGM as the blood sugars dropped. I cheered – the relief was incredible!! At basecamp, I discovered that one or two other people had noticed the same effect. I didn’t hear them cheering but I bet they did too! For Kilimanjaro, I was still on MDI and cut my Levermir dose by 50% each day.”
8. G: “I get a clear sense that all of those you’ve met in recent years, who also live with Type 1, have added a real essence of empowerment to your life.”
P: “I have felt incredibly empowered by meeting new people and by doing so much more in the world of Type 1. It is really wonderful to be able to give something back and to support others where possible! If my story of living well and for so long with this condition, gives people a little more hope and encouragement, I will feel so delighted.
I am extremely greatful to be living in this country, where we have our wonderful NHS, and it is easy to get all the necessary supplies and equipment to survive and keep well. I greatly admire the remarkable work you do, Gavin, to help many people worldwide, who are so much less fortunate than we are. Thank you for all the fantastic work you do!”
9. G: “So what is Peter Davies’ message to others living with Type 1 diabetes around the world, from the perspective of someone in their post diamond jubilee years with T1D?!”
P: “To be as positive as you can be and aim to have a great life. Approach and attitude to Type 1 can be such a powerful thing for health and well-being. Never use Type 1 as an excuse NOT to do something – most people can do anything with the right attitude and proper preparation. I would encourage people to get to know and support others living with the condition and to really get involved in the T1 community. One hears of people feeling so negative about life with Type 1 diabetes, but if we can encourage a positive approach, it is possible to make such a big difference.”
Believe you can and you’re more than half way there!”
Pete’s Peru fundraising pages are still active if anyone feel they wish to support the endeavour. Total raised so far is £4329.20 (£750 – paid directly to the charities so does not appear on ‘Just Giving’).
Pete’s 60 Years With Diabetes RD Lawrence Medal from Diabetes UK!