It was a rather gloomy day in November three years ago. I had just come home from work and went to get the mail. There was an envelope from my diabetes care centre. I thought it was just the basic invitation to my next endo appointment, but when I opened the letter, it turned out to be something different.
I live in Finland and when it comes to diabetes, a lot of things are done right. We have cheap healthcare and medicines and the government really makes it easy for us to take care of ourselves. We have a national diabetes association with 104 or so member associations. The member associations organise regular meet ups for type 1 and 2 diabetics, though the type 2 events are a lot more common. There are some 50 000 type 1 diabetics and an estimated amount of 500 000 type 2 diabetics among Finnish people. There are 5,5 million inhabitants in Finland, so 10% of us have a diabetes of sorts.
But I digress. Back to the letter! When I received that letter twelve years had passed from my diagnosis. The letter was a formal statement that some background retinopathy had been found from my eyes. Now it is really not a big deal and it is even known to disappear on its own if treatment levels improve. But for me, it was the first time my diabetes had caused something extra. It was a reminder that indeed, this condition of ours is a serious business. I felt really bummed out and depressed. I guess I also felt alone.
Facebook changed the game for diabetics
So out of those 50 000 type 1 diabetics in Finland, almost 5 percent belong to this one particular Facebook group. One media discussion group reaches every twentieth person with diabetes in Finland. It is a crazy amount. I have close to a hundred type 1 diabetics as my personal Facebook friends. A bit over five years ago I knew maybe two or three other type 1 diabetics. At some point I just decided I wanted to get some peer support and started looking up diabetes associations and online groups. I took part in events like diabetic cabin weekends, cruises and was organising them as well through one of the diabetes associations.
When I got over the initial shock of my letter, I immediately reached out to one of my best friends with diabetes, Karita. After an evening of chatting on FB messenger, I felt better and more determined to take better care of myself. I didn’t feel alone anymore. My online diabetic safety net caught me in my time of distress. For me it was one friend, for others it is often the Facebook discussion group. People share really personal diabetes worries there and they always find comfort, support and encouragement from those discussions.
Dottli helps too!
The one thing the discussion groups don’t do though, is this grassroots level peer support. That’s where Dottli comes in. When you log a bg value, a meal or insulin dosage (or anything for that matter) and you have decided to share that kind of information to your friends, the values are instantly shared to this messenger-like chat. And others can comment your values, rate your meals and post their own values as well. All measurements are there for your friends to see and comment. I have received so much insight and motivation from my friends through this kind of automated value sharing.
There is so much support available both offline and online that it is possible to never be alone with diabetes. Once you share your diabetes with fellow diabetics, you will feel better. Trust me.
Earlier this year I was asked to have a lecture about diabetes. Normally I would have just shared my own views, but this time I wanted to include the views of many diabetics. I made a quick survey and posted it in a diabetes-related discussion group. A day later I had almost a hundred responses. One of the questions in the survey was “What is your biggest problem with diabetes?”.
The list of five familiar to most of us
Eighty-six type 1 diabetics answered the question. Here’s the list of five things people consider their biggest problem with diabetes is:
My BG levels often go up and down like a rollercoaster
I am tired of taking care of my diabetes
I am not receiving enough medical supplies to take care of my diabetes properly
My diabetes and exercise don’t go well together
The dawn phenomenon is messing up my bg levels
I personally have suffered from all of those problems with diabetes at some point of my 15-year-long “diabetes career”. In my country, the public healthcare covers the price of supplies, but most often you don’t get enough of them. My double diabetes diagnosis makes sure the my BG levels are never steady. Every day my diabetes seems to act differently depending on a seemingly endless list of affecting factors. Before I got an insulin pump, my BG levels would go through the roof before waking up in early morning. Pump also made combining exercise and diabetes much more easier. Many of those listed problems have a very real solution, we just have to find a solution that works for us.
“What can help you counter these problems?” x 86
What did the diabetics hope to have as a solution to their diabetes problems?
“I would like to have CGM”
“If someone could share my woes and support me mentally”
“I wish there would be some technical aid for me”
“I wish my endo would face me as a person instead of a series of values”
If I could relate to all the problems, I sure as well can relate to these glimmers of hope! CGM (Continuous Glucose Monitoring) helps A LOT, for sure. Too bad CGM is really expensive and out of reach for many. But when it comes to receiving support, things are often better. National diabetes associations have all kinds of peer support activities available world-wide and online discussion groups are also a great way to share your worries and receive support. Sharing things with an understanding soul can really help with diabetes burnout.
Talking about online support, there is our very own Dottli app, which can help you with peer support and technical aid aspects. You can invite your diabetic (or non diabetic) friends to your Dottli channel and share your logged values automatically. On the chat channel, you can comment on each others’ every value or none at all. You decide what you share and comment. It can feel great and motivating to have your best diabetic friend give you comfort when you are struggling with high bg levels.
A good diabetes doctor can make a huge difference. It is funny how a person you meet maybe two hours each year, can have such a profound effect on your well-being. Supporting and understanding doctor loaded with great advice can truly change your life. I used to struggle a lot with doctors, but finally I found a great one and I hope to keep her for a long time! 🙂
We all have our biggest problem with diabetes but we can try to search different solutions that work for us. It is important to reach out and try to find fellow persons with diabetes who can really understand what you are going through. Facebook is a great tool for finding online peer groups!
– The writer is one of Dottli’s diabetics and social media guy.
Did you know you can automatically track your sleep and exercise with Dottli and Fitbit? Earlier in the summer I started using Fitbit Flex 2 activity bracelet with Dottli app. My daily walking goal has been 10 000 steps and 7 hours of sleep. On the days I miss those goals, my BG levels tend to climb a bit higher than normal.
Fitbit activity bracelet and Dottli app make a great combo!
Fitbit + Dottli = diabetes in better balance
It has been interesting to track my sleep and activity. Both of them have a great impact on my diabetes. All of the data gathered by the activity bracelet is automatically logged into Dottli app. It is nice to compare how my most active days and median blood glucose levels tend to have a correlation. Like I wrote in my earlier blog post, I’ve been diagnosed with both type 1 diabetes and metabolic syndrome, which is pretty much the same as type 2 diabetes. Living with metabolic syndrome means that having a lazy day reflects instantly to my bg levels. Staying active is a key element in my diabetes self care. And sleep is another one. If I sleep poorly, I tend to eat more during the day and resisting the allure of sweets is much harder when tired.
I like having a bracelet which is really unnoticeable in my wrist, lasts for 2-3 days and charges fast. The data it gathers gives me insight on things that really have an impact on my well being. With Dottli, I can compare that data to my diabetes-related loggings and become more aware. If I have moved a little bit less and my BG levels are off, I can quickly connect the dots and take better control of my diabetes(es).
Midsummer or “Juhannus” as we call it here in Finland, is my favourite holiday. For many, the summer really starts from Juhannus. The reason for this is that while it can be cold and rainy, it is the most popular time to start one’s summer holiday.
Traditionally Juhannus is spent on summer cabins by the lake. The fest often means having a lot of food and spending time with friends and family. Sauna (and beating each other with birch twigs while in sauna) and swimming are common pastimes of Juhannus.
Midsummer festivities and maintaining a steady BG trend
For diabetics, there are a few things to take into consideration while enjoying midsummer’s eve.
First, you are eating a lot or there is food to be had. Grilled meat, sausages and vegetables plus early harvest potatoes are among the classics of summer foods. It means that a diabetic has to factor in increased amounts of fat, protein and carbohydrates. It is hard to keep BG levels steady!
Second, if you are consuming alcohol (like it is tradition on Juhannus), you must be careful with insulin. Alcohol has a tendency to first raise your BG levels and then in a few hours, bring them crashing down. You do not want to go low in the middle of the night.
And third, swimming and sauna can have an effect to your insulin absorbtion.
Lot of greasy food with carbs, alcohol and sauna can make for a great evening, but for a diabetic it will be a challenge to maintain good BG levels. I find it easier to easen up a bit on my BG goals and just go easier for this one magical night.
I like sharing pictures and bg values from my evening on Dottli’s messenger. It’s fun to see that my over-the-top BG levels are not that uncommon among diabetics on midsummer’s eve!
The writer has had t1d for 15 years and feels like his health is better because of diabetes and the more strict lifestyle it demands.
Bonfire is an important part of Finnish midsummer festivities.
What are the core pillars of diabetes management? Type 1 diabetes is a complex condition, which tends to keep us wondering what are the causes for strange bumps in our BG trends. Sometimes it feels like we have no control over our beloved partner in life. And sometimes the cause for continuous high BG levels can be because we have forgotten to adhere to the very basic rules of thumb of diabetes self care. Here is a list of seven things that should be present in our daily lives.
The diabetic, who takes care of himself…
…measures BG-levels regularly
I think we all know that we cannot have optimal BG levels unless we measure BG levels regularly. That’s the one and the only way to know, how our treatment is succeeding.
Exercise is good for all of us, but especially for us diabetics. Exercising keeps our metabolism active and often that makes it easier to predict the effect insulin will have on our BG levels. You might need to find the proper insulin dosage for post-exercise days, but it’s totally worth the extra effort!
Regular exercise can help in keeping bg levels near optimal.
…eat healthy, counts carbs
Avoiding extra fat, salt and sugar helps you manage your BG levels. Salt will also increase your blood pressure, which is not a good thing for diabetics. High blood pressure increases the strain to your veins, heart, eyes and kidneys. It’s good to weigh food every now and then just to check if your carbs estimations are right. Carb estimation is rarely as accurate as carb counting.
…checks and adjusts carb to insulin ratio regularly
By making meal pair measurements you can analyse if your insulin dosage is at a proper level for each meal. Meal pair measurement means measuring BG before meal and two hours after the meal. In the morning you might need more (or less!) insulin per 10 grams of carbs than in the evening. The only way to get your treatment right is to do meal pair measurements! Also, you should consider actually counting your carbs when doing the meal pairs.
…enjoys peer support
Self-caring diabetic knows the power of peer support. It’s gives so much energy to meet people who understand your diabetic problems from just a few words.
…analyses treatment results and thinks how to make changes
You have a doctor and a nurse supporting you in your diabetes management, but it’s ultimately you who makes the treatment decisions. You have to get to know your diabetes and body in order to be really successful. What kind of response does your body give to cardio exercise? What about weight training? How does your need for insulin alter during different stages of the day? Where are your cannula sweet spots? Life teaches you these things about diabetes and by analysing your treatment, you really get to know your body and diabetes.
…has mercy on himself in the end
The meaning of mercy can not be overemphasized. You do your best and that’s enough. We all fail and the bad days come for all of us. Diabetes management not a sprint, it is a lifelong marathon.
“Aw yea! A full night of sleep with optimal BG levels!”
Diabetes or no diabetes, the days of our lives are filled with small moments that can brighten our mood if we are perceptive enough to notice them. I call those rays of sunshine as something that brings me ”Good Mood Diabetes”. Living life as a type 1 diabetic, the positive rays can be scarce at times, but when you do finally find them, they can be rewarding. Here is what I often find to be my ”Good Mood Diabetes” signs.
Perfect after meal value
This one I get almost every day at at least one meal. My BG value isn’t necessarily top notch, but my estimation was correct and BG value was at least somewhat good!
Carb estimation success! Yeah!
The cannula works like a dream
These occurrences tend to be a lot more rare than I would like. But boy, it is always a good 3 days when the cannula hits “the sweet spot”. Rotating the injection sites at at least 4 different locations seems to help a lot. Finding the sweet spot is actually a bit more than just a little ray of sunshine, it lifts my mood a lot.
Look at that straight line, that’s 12 hours!
A1C has improved since last time
Oh this is a really Good Mood Diabetes factor. When it happens, I usually tell all my closest diabetic friends and family. Maybe I even do a little victory dance!
Dottli has helped me and a lot of others improve our A1C.
Exercise without a hypoglycemia
My BG usually rises through the roof after exercise, but during it, the hypo risk is always there. Good preparation and having some carbs really helps avoiding hypos during exercise. When you nail it, it feels good. And if you manage to counter those post-exercise highs, even better!
Ah, the smell of a fresh new year! Another cycle full of moments waiting to be seized! Traditionally many of us make a resolution on how to better our lives. I, too, have made my share of resolutions over the years. I had solemnly sworn to never eat candy again, lose half of my excess weight and run a half-marathon. Needless to say, none of them happened. The thing about new year resolutions is that if you start reaching for the moon, you are bound to fall down. Trying to uphold a large life change is really hard. That’s why all the gyms are filled with people in the beginning of the year, but a month later things are back to normal.
But I can share you in on a secret to a successful resolution! Like all great things, it is a simple one: make it concrete, a tangible resolution. So instead of saying “I will start exercising”, say “I will move one additional hour each week”. Change “I will eat healthy” to “I will eat salad at lunch and dinner” or something similar. Start with a small decision and once you have made it work, take up another challenge.
But what about diabetes? Could our resolutions be linked to taking better care of our dear companion? Something small, tangible and easily doable? For sure! Here are a few suggestions for a new year’s diabetes resolution:
1. I will measure my BG always before and after a warm meal
You can log them on Dottli and analyse them later on with the trend reports!
2. I will check my injection sites and feet every two weeks
Mark the times to your calendar and thus increase your chances of succeeding!
3. I will switch my cannula after two days
Sticking with the thing even for 4 days is my bad habit. Your sites stay in better condition and recover more fast if you change the set more often.
4. I will attend a peer support meeting at least once
If you haven’t yet, you should give it a chance. You might be surprised of the effects it can have on your well-being. Just look up your local diabetes association and ask them for information on meetings.
That’s it! Whatever you end up deciding, just remember to be merciful. Your diabetes resolution doesn’t have to end when you fail for the first time. Just pick it right up again. All the best to your 2017, let’s make this year great!
We all have the power to influence our diabetes management in a major way. And it is a double-edged sword. If we want to, we can really focus on taking care of our condition and thrive through the right motivation! And if our strength has waned and diabetes has fallen low in our list of priorities, the back edge of the sword cuts deep too. A poorly managed diabetes is truly not a benevolent force.
We often talk about the role of our endo and the diabetes nurses in getting to a good A1C. But the reality is that about 99,9 % of our diabetes-related decisions come not from our endo, but from us. We make the decisions, we count the carbs and administer the insulin. For sure, the outside eye of our doctors and other care staff can have life-changing effects for our diabetes balance, but the rest is up to us.
Building blocks of motivation
And what do we need to make the best of our condition? We need information, skill and most importantly, motivation to manage diabetes properly. When your know how of diabetes self care increases, you usually gain motivation to treat yourself better. It is just good to keep in mind that it’s normal that there will be fluctuations in your self care motivation. We have so many things going on in life, that it is very hard to keep on going at 100% with diabetes management. Sometimes our life throws an unexpected punch or two and suddenly you might find yourself not caring for your diabetes. It’s good to try and stay aware of the mental resources you have at your disposal. When it’s hard, give yourself a bit of mercy and try better tomorrow, or maybe next week.
An important part of long-term self care motivation is the feeling that your efforts pay off. If you are struggling to keep your diabetes in check and nothing you do seems to have any effect whatsoever, it will be hard to stay motivated. When your actions lead to better BG levels, it is easier to stay motivated.
If you feel that your motivation needs some boosting, you can try these things:
1. Hone your diabetes self care skills
Contact your nurse or doctor and talk to them about the things on your mind. If your treatment is off, discuss it with them and try something new to regain control. It’s also good to refresh on carb amounts of different foods.
2. Get support
Just talking can help you stay motivated. Talk with your friends and other people close to you. Or if you feel you don’t have anyone who you can talk to, maybe look up a nearby diabetes peer support group or go online. Sharing your feelings and troubles can lift your spirits! With Dottli, you can chat up with other diabetics and share your values instantly with them.
3. Set suitable goals
You can feel that you have enough knowledge, skills and knowledge, but taking diabetes management a part of everyday life is still hard. Maybe you are focusing too much in self care? Try setting goals that do not require too much work. What is the maximum amount of effort you can put in without tiring yourself? Set your goals at a lower, realistical level at first and build up from there. If your goals are too high, you might get diabetes burn-out and then your self care really takes a hit.
4. Focus on things that build your well-being
It can be useful to build awareness about what makes you feel better and what causes stress. Focusing on the things that build your well-being and leaving the stress factors behind you, can help a lot. Of course there are situations when you just can’t leave the stressful things behind. In those moments, maybe it’s just best to endure the stressful situation and maybe look around for those little rays of sunshine.
5. Make room for diabetes self care
Work can be hectic and sometimes it can be hard to find a suitable moment to measure your BG or take insulin. Sometimes it’s impossible to avoid those moments, but trying to make room for bg measuring, insulin injections and carb counting really makes a difference in managing diabetes. Health always first.
Are you thinking about gift ideas for a type 1 diabetic friend? Coming up with gift ideas for our loved ones is always hard! But for us type 1 diabetics, there is hope! We made a list of five + one gift ideas that can delight or be of use to a fellow type 1 diabetic.
1. All things Withings & Fitbit
The first item is actually a bunch of items that all work with our free Dottli app. Just about every Withings and Fitbit product will sync with Dottli and help us to automate our daily value logging. Their selection includes a blood pressure meter, a weight scale, activity trackers/smart watches, thermometers and so on. A blood pressure meter in particular is an important item for every diabetic to have, because long term high BP is damaging for our veins, kidneys and eyes. Steady monitoring can alert us in time if the pressure levels have climbed too high. These benefits make them very good gift ideas for a type 1 diabetic friend.
Next up are some affordable accessories and other goods that make for great gift ideas.
2. The cookbook for diabetics
Of course there is no longer a need for “diabetic diet”. But having a cookbook full of delicious and healthy recipes with calculated at-a-glance nutritional information is very helpful. It means that you don’t have to estimate the carbs in your meals. You know it exactly and just like that your diabetes management gets easier! Get it from Diabetes UK!
3. The Spibelt
This elastic belt goes with me on every jog. It feels good against my skin, doesn’t cause chafing and I can fit my insulin pump and carb gels in it. When you don’t have suitable pockets, spibelt works great.
4. Keeping your insulins cool
When you need to keep your insulins chilled, Frio helps. The manufacturer promises Frio will keep your insulin cool for a minimum of 45 hours. So for those hot days, this product will help. A lot of users are also reporting that when exposed to warm water instead of cold, the Frio can prevent your insulins from freezing. It works both ways!
5. Myabetic diabetes cases and purses
Nothing beats a good case for diabetic supplies! A lot of diabetics like to craft their own diabetic supply purses, but Myabetic makes great cases for diabetic supplies too! Their main target audience seems to be female, but their assortment has some options for manlier taste too!
+1. Diabetes Wall Calendar for 2017
And the plus one! A Finnish non profit diabetes community called “Diabetesseura Plasma” made a wall calendar for next year. The calendar is in Finnish and the weeks start from Monday, but other than that, it is very usable for all languages. The calendar was made for raising awareness of what it’s like to live with t1d, what are the differences of type 1 and type 2 diabetes and proper first aid for unconscious diabetics. Oh and all the calendar models are nude and type 1 diabetics, much like the t1dexposed project which inspired the calendar. All proceeds go to the non profit association behind the calendar. Find it here.
That’s it! If you’d like, leave a comment with your own recommendations of gift ideas for a type 1 diabetic friend!
When does a person decide it’s time for a lifestyle change? What is the trigger that finally causes action? For me, it was when my endo told me I’m developing a type 2 diabetes. “That’s crazy, I thought! A type 1 can’t be a type 2!”. Read more →
Dottli is a digital health company based in Finland and improving life with diabetes is our first focus. As a hub for connected health apps and devices and with cloud-based intelligence, Dottli can also provide real-time support on your personal health goals.