Hello! Who are you? And tell us a little bit more about your diabetes.
I’ve met a lot of people with type 1 diabetes, diagnosed at various ages and as a result, I’m grateful that I was diagnosed at a young age. I was around 10 years old and it was during the Summer break from school. I was clearly very unwell and exhausted, despite usually being a really physically active kid.
I can’t say it really feels like a huge black and white difference between my life before and after diabetes. I don’t wistfully think of my life before diabetes, mainly because I can’t really recall much changing.
I have never hidden my diabetes from anyone and I’ve never been self conscious of it. I’ve always told myself that if anyone had a problem with it, or viewed me negatively as a result of it, then they were the kind of person whose opinion wasn’t worth me considering and they wouldn’t be a great loss to me.
I remember my mother being very panicked and upset when I was diagnosed but I was just really confused as to why she was reacting that way. I’d spent lots of time in hospitals as a child because I was really accident prone and this just felt like another one of those visits to the emergency room. My mother, I think, was most upset by the permanence of it. She’d seen how unwell it had made me and was now being told that her child would have to have injections every day for the rest of his life to avoid that. She was upset for me, for all the things she assumed I would miss out on because of this diagnosis. She certainly catastrophised it but she had little to no understanding of type 1 diabetes. Back then, support was very poor for newly diagnosed patients and parents of patients. I was quite oblivious to it mostly, we monitored my blood sugar levels only very superficially, because we knew no different. So it didn’t impose on my early childhood much. I didn’t have any serious hypos, but looking back now, it was probably because my blood glucose levels were quite elevated.
I am thankful that I was born in the U.K and due to our National Health Service, the diagnosis was not a huge financial burden for my parents.
“The main take home is that it WILL become easier, you will only become more knowledgeable and better able to manage it with time and a lot of trial and error. It’s okay to get it wrong.”
How do you treat your diabetes, did a lot change over the past years and are you able to manage it well?
I manage my type 1 diabetes myself. I’ve had it for so long now and I’ve become quite confident through a lot of trial and error and learning my body. I rarely speak to my diabetic specialist nurse or consultant when considering changes to my regimen. There’s just so many things to consider when you’re making changes, that it often ends up with you being the most appropriate person to make informed changes. I have a fantastic diabetic specialist nurse at Addenbrookes Hospital in Cambridge. When I’m not sure about something, or need some advice on a situation I’ve not encountered before, I can always pop her an email. Diabetes is very unusual in that it’s one of the only medical conditions where you essentially become your own prescribing doctor. You make complex dosing decisions without the support of a doctor, using a potent medication that’s usually kept under lock and key on hospital wards.
At the moment, I use an Omnipod pump with Novorapid Insulin. I use a Dexcom G6 CGM and have recently started “looping” with this combo using a RileyLink.
I started on a Mixtard insulin in a vial with disposable needles. It was absolutely awful, I had to take it ages before a meal and my control wasn’t great on it. I remember having to really fight to get moved onto Lantus and Novorapid, which improved my life considerably. I tried a few different long acting insulins, including Tresiba and Levemir. I finally settled on using Fiasp and Levemir and found this to be the most effective combination for my body. I’d struggled with hypos during exercise on the other long acting insulins and highs after meals before I moved to Fiasp. I had hoped to use Fiasp in my insulin pump, but after several times testing it, I found myself becoming quite resistant to it and moved back to Novorapid, which has been working well for me.
So much has changed for me even in just the 20 years I have had diabetes. From a positive perspective, I have started using far more effective and flexible insulins and treatment techniques, such as carbohydrate counting. Technology has improved my life with diabetes tenfold. Occasionally, I have to go back to pens and fingerprick testing and it’s useful to give me some perspective of how lucky I am and how much I have to be grateful for. There have been some negative aspects though. As I grew older, I became more knowledgeable and aware of my diabetes but this was a double-edged sword, as I also became more conscious of the potential complications. This was particularly difficult for me when I started my current career as a coroner/medical examiner officer. In my job, I was faced, quite graphically, on a daily basis with the potential complications of diabetes. I used to get really anxious when my blood glucose was elevated as I imagined what was happening physically to my body. I’ve had to be quite strict with myself and be realistic to avoid thinking like this.
I think I manage my diabetes fairly well. When I was on pens, my HbA1c was 70, with a lot of effort, I managed to get it down to 60, but just couldn’t get it any lower safely. Now I’m on a pump, I feel like I’ve managed to smooth off the lows and highs considerably and my last HbA1c was 47. I’m really pleased with this, because I don’t micromanage my condition, nor do I impose any dietary restrictions. I try to strike a balance between good levels and not letting my condition impose on me too much.
Can you recognize the symptoms of a low/high blood sugar? Do you test often and can you tell a bit more about your experiences with low blood sugar?
Sometimes, I can recognize them. I always had excellent hypo awareness up until 2018, when I collapsed and had a hypoglycemic episode at a train station, with no warning signs. Since then, I’ve lost all my usual warning signs entirely. Previously, I used to get mild symptoms at around 3.9 mmol/L (70 mg/dl), such as that feeling in your stomach and light headedness. Then more severe symptoms anywhere below 3.0 mmol/L (54 mg/dl). Now, I can sometimes feel absolutely fine, check my blood glucose and it’ll be 1.6 mmol/L (29 mg/dl). I occasionally get very mild symptoms, but I have no confidence in them. I find the best way to describe a hypo to a non-diabetic is to tell them to imagine getting slightly drunk, then sprinting as fast as they can on a hot day, so their pulse is racing, they’re sweaty, light headed and unsteady on their feet. Then to combine that with the feeling you get in your stomach when you’re waiting to get on a rollercoaster, before a job interview, or asking someone you like to go out on a date. I get high symptoms too, mostly my vision goes blurry, I get thirsty, I have a headache and I become very irritable and short tempered.
On fingerpick testing, I tested about 8 to 10 times per day. Now I have a CGM and Omnipod Loop, I can check my blood glucose and dose using my phone. I probably check it 50 times a day, depending on what I’m doing.
To treat my low blood sugars it depends on how low I am, how rapidly the blood glucose is falling and what I’m doing afterwards. My closed loop often deals with minor hypos itself, by reducing my insulin. But for mild hypos, where it’s not too urgent, I prefer to use fruit juice. It doesn’t act as quickly as glucose, but I might as well try to be healthy whilst I treat a hypo. For severe hypos, I use a glucose based sports drink.
I fainted a few times, mostly in the early morning/night. I would say this is the most dangerous time to have a hypo, because you’re sleepy and although you wake up, you often don’t feel the symptoms and go back to sleep. The first ever hypo collapse I had was the worst one. My friend came round to my house early in the morning, as we’d planned to go do something and I didn’t answer. He could see me unresponsive on my kitchen floor in a pool of blood. He forced entry and called the ambulance and luckily they got to me in time. I was acutely aware that I would have died if my friend had not been due to come over and found me. This was whilst I was still on fingerprick testing and insulin pens and I became very paranoid and would set 2 hourly alarms to wake up and test my blood glucose through the night.
Food and diet
How does your diabetes affect your eating and do you find being on a diet restrictive?
I rarely eat breakfast during the week as I don’t tend to be hungry first thing in the morning and I’m far too lazy to get up earlier before work to give myself time. I find that breakfast cereal causes big blood glucose spikes for me. So on the weekend I usually stick to eggs or low sugar Skyr or Quark. I sometimes skip meals.
I like to travel a lot and try to make food from the places I’ve visited. I like Greek Souvlaki with warm pitta bread and tzatziki. My favourite food is Bavarian, but there’s a lot of bread, carbs and wheat beer! So you need a lot of insulin!
I snack quite a lot between meals. I prefer to eat little and often throughout the day when I’m hungry, instead of sitting down for large meals. I find that this helps my blood sugars by having the smaller up front doses of insulin. I usually eat things like satsumas, cashew nuts and dried mango.
I only really tend to make changes to my insulin schedule to how I dose if I am going out to a restaurant or I’m having a takeaway, like pizza or Chinese food. I find that takeaway food and even restaurant versions of familiar food have a much higher fat content than at home. So I usually do an extended bolus to try and stop the blood glucose spike a few hours afterwards.
Drinking water is something I am very bad at! At home, I try to drink at least two liters a day. When I’m at work, I often get really busy and forget. I’ve started filling a liter water bottle when I arrive and aim to finish it before lunchtime. Then I refill and keep going. I’ve heard that it’s important to keep well hydrated to maintain the accuracy of your CGM too.
I find being on a diet restricive. For me, the freedom to eat whatever food I like and eating out is quite a big aspect of my enjoyment of life. Having to be on a very restrictive diet, such as an ultra low carb diet, would personally outweigh any benefits to my blood glucose control. I restrict certain obvious things from my diet or find alternatives, because eating or drinking them just isn’t worth the hassle. For example, I wouldn’t drink full sugar soft drinks, I’d always drink the low sugar version. I also eat pizza sparingly. But I have a varied and relatively unrestricted diet and still achieve HbA1c levels that I am pleased with.
When people ask me about certain food I can or can’t eat it all depends on their tone. If someone politely asks me out of curiosity; “Oh, can you eat that with your diabetes?” I’ll happily explain why I can and how I calculate my insulin dose for it by counting the carbs. We can’t expect everyone to have a thorough knowledge of every medical condition they don’t personally have. They’re usually speaking from a position of very little exposure to diabetes, so it’s a good opportunity to educate. The most judgemental people I’ve come across with respect to diet choices have been other diabetics online. I get quite annoyed by that. Life isn’t all about numbers and it’s okay to enjoy foods that aren’t ideal, in moderation.
Do you believe that a plant based diet can improve diabetes? Did you ever experiment with this?
I don’t have enough experience to say if a purely plant based diet could have an impact on blood glucose control. I eat red meat sparingly and try to buy the highest quality I can afford. I mostly eat chicken and fish. I’ve used meat substitutes like Quorn quite a bit and haven’t seen any noticeable difference in my blood glucose control. I use milk alternatives such as soy milk. I prefer oat milk but it has a lot of carbs in it, so I have to use a lot of insulin for it.
Do you have a hard time eating out in a restaurant? And what are you thoughts on making this easier?
Lots of chain restaurants have carb counts online now, which makes things much easier. One of the biggest difficulties I have is being able to pre-bolus before a meal, because you never really know when it’s going to arrive. Another complicating factor is that restaurant cooked meals often have a much higher fat content than compared to home cooked, they’ll have used butter or double cream in things. This can cause the delayed highs hours later. I make things easier by using a visual carb counting app on my phone but the main thing is just trial and error. It’s okay to not get it right first time, just learn from it and make adjustments next time. I’d like to see more carb counts available for larger chain restaurants online. I’m not too keen on seeing them printed on menus as I think this could be quite harmful for those with eating disorders.
I like small restaurants serving unusual food that I wouldn’t usually cook myself. My favourites at the moment are the Turkish and Nepalese restaurants in my local town.
“The freedom to eat whatever food I like and eating out is quite a big aspect of my enjoyment of life.”
Exercise and work
Does your diabetes restrict you from exercise or your daily job?
I go to the gym quite a lot to use the weight machines but I prefer to be outdoors. I do a combination of running, cycling and kayaking when the whether is good. I really like to go hiking in the mountains too.
I used to be a police officer and found that the night shift patterns really complicated setting up my basal rates. But I managed it on pens and fingerprick tests doing unrestricted duties without any issues. I’m now a medical examiner officer in the National Health Service (NHS). It doesn’t affect my diabetes too much, but sometimes it gets really busy and my diabetes has to take a back seat for a while. No day is the same. Sometimes I’m running back and forth between hospital wards or in the mortuary studying medical notes. I’m glad I have the Omnipod loop working in the background to take care of things during these times.
Do you have any positive or negative effects because of your diabetes?
The main thing I have found that helps my diabetes control is regular exercise. I have found that reducing my body fat level, increasing muscle tone and just generally getting fitter than I was, has increased my insulin sensitivity. Otherwise you can get into a vicious circle where you need increasing amounts of insulin and the more you take, the more resistant you get. I also find that pre-bolusing and taking a very short walk after eating a large meal had a big impact on reducing my post meal blood glucose spike.
The hardest part is knowing that at present, there is no end in sight. It’s something you’re going to have to do for the rest of your life. It’s not something you can ever step back from or take a break with. It’s there 24/7 and will bite you if you don’t give it the attention it needs. One of the things I found difficult is that I am a perfectionist. I was always seeking the “ideal” basal rates and got so frustrated when they were constantly changing. I found it difficult to accept that my insulin requirements are always going to be in a state of constant flux. I’ll never find that “perfect” insulin setup.
The best part is taking the time to sit and be kind to yourself and realize that you’ve done all these things despite diabetes. That it’s actually really difficult and the majority of people don’t share this additional burden. That just managing the diabetes itself is essentially like having another full time job where you work 24 hours a day, 7 days a week, with no holiday. You’ve achieved something impressive.
Thankfully, I’ve not really experienced any serious complications due to my diabetes. I have some mild background retinopathy from when my blood sugars weren’t as well controlled in my youth, but it doesn’t affect my vision at all. Occasionally, diabetes gets the better of me mentally and I can suffer with a bit of depression and anxiety about it. I’ve found that meeting or speaking to other people online with diabetes has really helped here. It’s very easy to feel alone with this condition.
I don’t feel any negative impact on my diabetes because of religion as I don’t have a faith. I have had cause in the past to be frustrated about where I live, because it has prevented me from getting access to certain insulin or diabetes technology. The NHS has a finite amount of resources so I accept that I won’t necessarily be able to have the latest cutting egde diabetes tech that some of my friends in other countries may have. But I am grateful in our National Health Service that I don’t have a heavily financially burden by my diabetes, nor do I ever have to compromise my own health and well being due to the prohibitively high cost of basic medication. It’s good to have a sense of perspective and realize how lucky we are in our country, as so many others do not have easy access to the basic diabetes medication we take for granted.
What is the best advice that you can give to non-diabetics, new diagnosed diabetics and diabetics?
That firstly, type 1 diabetes isn’t caused by diet or lifestyle choices, nor is it currently curable. I’d like them to know although it doesn’t look that much of a burden on the face of it, from what they can see on the outside looking in, it really is. The only reason it appears that way is because of all the work we are doing behind the scenes to constantly manage our blood glucose. It can and often does have serious consequences.
I would tell them to meet with a good variety of others with their condition as soon as possible, be that online, or in person. Ask your diabetes specialist if there are any local groups. This whole thing is much less of a burden when it’s shared and any diabetes query or issue you’ve faced. Someone else will have been through the same things before and will happily tell you about their experience and offer advice. I think the main take home is that it WILL become easier, you will only become more knowledgeable and better able to manage it with time and a lot of trial and error. It’s okay to get it wrong.
I would say learn how to carb count and adjust your insulin accordingly. This opens up a whole new world of possibility for you and makes things much less rigid. Educate yourself. A small amount of effort put in reading and learning about how to manage your condition will pay huge dividends in both the short and long term. It helps you become independent and less reliant on your healthcare professional. It’s your body and it’s only going to help you learning about the tools you have available and how best to use them. I try to maintain a really positive outlook, even though it can sometimes be hard. I try not to focus on the things diabetes stops me from doing, but instead to think of all the things I can do despite it, by making some adjustments. I always remind myself that even within living memory, this condition was a death sentence. It isn’t anymore and we’ve made huge advances in how we treat it. There will no doubt be even more advances in our lifetime.
What would you ask the other diabetics?
I would ask them what do they tell themselves mentally when they’re going through a difficult time with Diabetes? What do they think about to increase positivity and resilience?
Feel free to answer in the comments below.
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