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!
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 →
Peer support plays an important role in my life. It reminds me of the positive effects diabetes can have. Meeting people who understand my condition relieves my stress about diabetes and makes it easier to cope with. The feeling of not being alone is a warm one indeed. But where can a freshly diagnosed diabetic find peer support? I made a list of five items to help you search for peers both in the real world and on the net.
Each country has its own diabetes association. Most often the purpose of those associations is to guard the rights of diabetics and organise peer support. You should search for your own country’s diabetes association. The associations often arrange local meetings around the nation and some even offer diabetes support persons for your aid.
Sometimes it can be a bit of a threshold to just go to a peer meeting. It can be easier to go for a run or hike with fellow diabetics. Some countries have online communities dedicated for diabetics with a certain hobby. See Connected in Motion, which is a community for diabetics who like outdoor activities (they have great videos!). Similar communities may be found in your country. Or maybe start one together with your local diabetes association?
Online groups. There are several traditional diabetes forums to be found around the net, like this one. Facebook also has a lot of discussion groups and probably in every language, so be sure to search for them. I like forums because it is easier to search for discussion threads concerning a certain subject. FB groups easily become a never-ending stream of duplicate threads.
Search for blogs and Twitter, Instagram and Pinterest feeds on diabetes. It can also be empowering just to read about others’ views on diabetes. If you just like reading and watching, search with hashtags. We use #t1d, #type1diabetes and #diabeticlife, but there are many others and also country specific hashtags, like #diabetesuk or #diabetesfi.
If you have a diabetes related question in mind and want to ask in anonymously, you can use JDRF’s Get Support function. You just type in some background information and your question and their volunteers will answer you! Of course, they won’t provide any medical assistance, but will answer questions about what it is to live with diabetes.
And one extra tip for peer support!
+1. Grassroots peer support! When you do find some diabetic friends, you can suggest sharing your logged diabetes values in messenger styled chat. Dottli’s app does the sharing automatically and it can really help to motivate you to take better care of yourself. I wrote a blog post about grassroots peer support earlier, you can view it here.
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.