Type 1 diabetes is an illness which is not easy to manage and it influences practically everything in life. When someone starts dating a person with type 1 diabetes, there might be some things that are good to know. Firstly, you should know the basics of type 1 diabetes. The internet has tons of very good information available. Here is a nice fact sheet about type 1 diabetes from Juvenile Diabetes Research Foundation (JDRF).
The symptoms of hypos and hypers differ amongst diabetics
Now that you know the cold facts, you should know that every person with type 1 diabetes is unique. Exercise raises someone’s BG levels, whereas others have to drink sugary drinks to avoid going low. Different diabetics experience low or high blood glucose levels differently. One might get angry or anxious when approaching a low BG, whereas some just go pale and shaky. It gets worse at the grocery store if one has a hypo standing in line with a chocolate bar in hand. They would just want to pay for the candy bar so they can eat it but the queue just won’t MOVE! That for e.g. is when I feel a bit aggressive but I have learned to just eat the candy bar while standing there and pay for the wrap.
Eventually you’ll probably learn to see when your significant other is acting “like in a hypo”. However, you might want to avoid suggesting a blood glucose measurement. Nothing feels as frustrating when someone invalidates a type 1 diabetic’s negative emotions by suggesting ”It’s only your diabetes doing its tricks”. I would think it is something like telling an angry woman “it’s just your hormones talking”. Tread carefully here.
At high BG levels the most common symptoms are fatigue and frequent need for urination, but there are differences here too. For the first few years since my diagnosis, I would get relaxed, more talkative and kind of upbeat when experiencing high BG levels. Having an actual “sugar high”. Nowadays I just feel tired and sleepy, I guess my body got accustomed to the highs. But back in the day when I was acting goofy, my GF often asked me if I had high BG, also bringing forth some frustration that “am I only goofy when I’m high?”.
The Zombie Hypo Mega-Munchies
Then there are the night time hypoglycemias. At night, the blood glucose levels can drop pretty low before the symptoms wake a diabetic up. When the hypo is more severe, the body signals very strongly, urging to eat as much as possible. This leads to ‘hypo munchies’ as I like to call them. It is not uncommon for one to stagger into the kitchen and look for anything fast to eat. Bread is fine, fruits too. Chocolate cookies and milk – OH YES! The morning after is horrible, the BGs are sky high, eyes feel swollen and the mouth tastes awful. I ate something my SO (Significant Other) had prepared for herself or for guests more than once and woke up with a super bad feeling and heard “WHO ATE MY SANDWICH?”. Eventually my fear of my wife’s wrath overcame the instinct level “EAT” command issued by my nightly hypo.
So nowadays while I’m on zombie eating mode (not aiming for brains though), I still have enough higher cognitive functions active to avoid eating stuff reserved for specific purposes or guests. But I’ll tell you, nothing tastes as good as chocolate chip cookies and milk when your body thinks its dying and the only cure is food. They say hunger is the best seasoning, but nah, the best seasoning is a massive hypo.
Then there are some, who don’t feel the hypos and just tumble down in the weirdest places. The loss of hypo feels is a dangerous situation and I’m glad it hasn’t happened to me yet. But my SO worries about me. Type 1 diabetes comes with its risks and complications are a reality for many of us. The complications can include changes in eye sight, problems with feeling on your feet, digestion, kidneys and circulatory system. But if you treat your diabetes well and should complications arise, treat them well too, everything should go reasonably well. Our lifespans aren’t that much shorter if living in a developed country and receiving good treatment.
Dottli provides a nice tool for couples with diabetes
The worst thing about type 1 diabetes at the moment for me is force feeding. I am trying to maintain my weight and there is nothing that frustrates me more than having to force feed. The need for force feeding occurs when I have to exercise and my BG levels are waaay too low. I need to bring it up, sometimes by a lot. I have had to eat a half jar of honey (which I strongly dislike) to get my BG levels to a safe level for exercise. Sometimes my body also suddenly reacts much more strongly to insulin and I find myself at almost hypo values with like 5 units of active insulin running through my veins. I have no choice but to eat, even if I just ate 30 minutes earlier.
These things greatly affect how people with type 1 diabetes feel about themselves. Hence it is a good idea for the SO to understand the things that are happening in the diabetics’ life. A great way to get know your diabetic’s illness is to start a joint chat channel on Dottli’s app. That way whenever a diabetic logs BG value, bolus, meal or exercise, the partner gets the information automatically on the chat channel. It’s a great way to learn to know your better half’s other life-long companion.
Where did my healthy habits go? I had a long summer holiday during which I slept in and didn’t really watch my diet. The whole spring I was able to withstand eating sugary treats, but when my holiday started, I succumbed. The daily routines like having a healthy lunch every day at 11 o’clock vanished. I could have my lunch at 14 o’clock and eat cake and candy in the evening. I suspect my weight has gone up by at least 2 kilograms during the last four weeks. This week is my first week at work and I know already it will be HARD to wean myself off of the daily sugar fix. Last time I fixed my diet in January, it took me several weeks to get past the sugar cravings.
My diabetes has been okay so far though. Even though my diet has gone awry, I have been able to exercise. The lawn needs mowing and that takes over an hour every week. I’ve gone to boxing practice at least once a week and I’ve hunted some Pokemon while walking in my brand new hiking shoes.
During holidays I sleep in late and eat poorly. That’s not too bad, one might even say it sounds like a proper holiday attitude. I have given myself permission to do all that, but I have kept in mind that it’s only temporary. Now that my work routines are coming back, it’s time to take control again. And this is how I’m going to do it:
1. I’ll go to sleep at 22 o’clock instead of midnight
2. I’ll start having steady, healthy lunches at work (I can now share pictures of my meals to my friends on Dottli’s chat channels!)
3. No candy or chocolate
4. Sweet pastries only on special occasions like birthday parties or other celebrations. It’s important to separate everyday life and times of celebration.
5. I’ll maintain my healthy exercise habits
I have a big sweet tooth, but salty treats are not a problem, so I’ll allow myself salty pastries in moderation.
I really enjoyed my summer vacation.
That’s my recipe for healthy normal life and more easily manageable type 1 diabetes. Healthy habits are an important part of type 1 diabetes care, they are not crucial only for type 2 diabetics. But a list with five items in it means that I have five balls I have to juggle with. I am bound to drop at least one of them and I am prepared for it. When I lapse, I’ll just pick up the ball right away. And if the lapse lasts a week, I won’t give up, I’ll just start again.
That’s the biggest rule of maintaining healthy habits: always start again, there is no such thing as game over.
When I was in high school, we did a 5-day hiking trip to Lapland. They say that once you visit the Finnish Lapland, it steals your heart. That’s what happened to me and for a very long time I wished I could go back there and hike for days on end. Read more →
Type 1 Diabetes isn’t a very good life companion. It can be very stressful and taxing to constantly treat yourself. You can’t get a holiday from diabetes and the complications of untreated t1d can be severe. Diabetes treatment is expensive and depending on your country, it can really make a dent on your finances. Is there anything good to be found from type 1 diabetes? Are there any silver linings? Here’s what I have found during my 14 years of diabetes.
A community and a good way of doing volunteering work
Some diabetics can go for decades without meeting other type 1 diabetics. I had a time period in my life when I wasn’t involved with other diabetics for almost 5 years. I did fine, but when I met others, I realised how nice it felt to share parts of the burden. My communities are online groups and in part more official diabetes associations. I attend meetings, hiking trips, events and whatnot.
I feel the communities really enrich my life and the meetings are really like a diabetic home base of sorts to me. And through the communities I have done volunteering, like “mentoring” teenaged type 1 diabetic groups. Volunteering is very important for me and diabetes has given me a good way to do it.
I think communities are an important part of social web for people. They prevent feelings of loneliness, provide a sense of belonging to something. Communities are good for you.
The biggest silver lining. Another diabetic understands your worries way better than “a normal” person. Your diabetic friend understands from a half a word and you don’t have to explain diabetes related stuff. They are also sources of peer support that help you endure this shared condition of ours.
I met most of my diabetic friends through community and diabetic meetings. Not all community members become my friends, but there is always some people I “click” with the most. Friends are one of the most important things in the world. And I have gained many due to diabetes.
Regular health checks, blood tests and health monitoring by endo
My genes are really bad. In addition to insulin, I take medicine for high blood pressure and cholesterol. My endocrinologist knows me and we have a good relationship. She monitors my blood work and adjusts my other medication accordingly. My tendency for high blood pressure was noticed by my endo in my early 20’s and I have already eaten medicine for it for 10 years. Instead of 150/90, I’ve gone a decade with 130/70 values, thanks diabetes!
A free reminder when I’m not living as I should
This one is related to my last blog post. When I don’t exercise enough or eat unhealthily, my BG levels constantly nag me about it. A normal person can forget to exercise and eat whatever and the body doesn’t really signal that you are doing something wrong. You just slowly gain weight and your blood values worsen.
Now if you listen to your diabetes, you can hear it signalling when your metabolism is slowing down and you need to do something. It reminds me to go and work out instantly. I dare to say I’m in better shape because of diabetes.
Healthier way of living
And in general, living with type 1 diabetes has made me more conscious about my general health. I want to keep myself going on for at least a hundred years still! 🙂 Young people often have an illusion of immortality. Like we can do whatever we want, we are young and can take it. No worries about tomorrow! Diabetes is a constant reminder that we are not immortal. Though a Finnish researcher Per-Henrik Groop has said that based on his study (FinnDiane 2008), if a type 1 diabetic can go on for 20-30 years without kidney or heart complications, he/she can live longer than a person without diabetes! Now there is a motivation to take good care of your life-long companion!
With my mind on these five silver linings, my diabetes burnout phases are shorter and milder. Even when I’m tired, I can still treat myself pretty well. Before acknowledging these silver linings, I felt like being alone with type 1 diabetes. I’ve found that when I focus my energy on the positive aspects of diabetes, it makes it easier to bear.
We’ve all been there. When you are so full of managing diabetes that even the most basic logging of values is too much. When diabetes burnout strikes, even measuring your BG can be too much. When you grow weary of diabetes, you easily prioritize everything above it. It’s totally understandable and I, for one, have been there many times. Usually when I’m there, I try to take part in my diabetes association’s peer support activities. When I’m with my fellow diabetics, I remember that diabetes is not all bad. It has brought joy and new friends into my life as well. And that makes diabetes easier to bear.
But sometimes it’s not possible to attend such activities and draw strength from my diabetic companions. How does one upkeep logging routine when the skies keep crashing down and there are no live meets happening? Well, online groups work great! There are a lot of Facebook and other discussion groups that can really empower a diabetic. But another option is grassroots peer support.
When you meet other diabetics in real life or online, you rarely go very deep into your diabetes management routines. You discuss your feelings and often talk about everything but diabetes and it still makes it easier to cope with diabetes stress. Grassroots peer support is about sharing your every BG value, carb intake, boluses and exercises with other diabetics. Everything you would normally log to your diabetes app, gets shared with one or two of your diabetic friends, parents or even your doctor!
That’s the best thing about the Dottli app. When I have been on a blood glucose rollercoaster for a day, nothing cheers me up better than my diabetic friends’ encouraging words in our Dottli chat. It’s like those popular IM apps, but with diabetes information mixed in. I get notifications when someone says something (I can turn off notifications for value log entries). And it’s always “nice” to see others have their share of those rollercoaster days too! 🙂 It reminds me no one is perfect when it comes to managing type 1 diabetes.
This grassroots peer support is a nice addition to live meetings and Facebook group channels. Those mediums can’t provide this kind of support and I’m so glad I have this thing. It makes logging values and managing diabetes almost fun! 🙂
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.