As you may or may not know, my husband has had Type 1 Diabetes for 20 years. That's a LONG time to deal with blood sugar control day in and day out. It's a frustrating disease and not one that many people understand unless they are living it.
When I met Greg about 5 years ago, I was introduced to T1D for the first time, experienced my first "sugar low" and experienced one of the scariest moments of my life. Trying to force an adult male who is flailing around on the floor, unable to speak, to consume some sort of sugar substance was nearly impossible for me. I had no idea what I was doing. As the Red Bull I helped him drink slowly started to kick in and he "came to", I realized this was going to be a long road. I started researching how to handle sugar lows, how insulin affected the body, the carb intake vs. insulin intake and what happened if either were lacking. I felt prepared. Nothing, however would prepare me for the sleepless night or worry that I had grown accustomed to...any slight difference in his breathing, sweat beads on his forehead, weird noises, I was wide awake thinking he was having a low. 90% of the time I was right and I would force him to drink OJ, eat glucose tables, etc. Sometimes he drank/ate what he needed to without any problems, but sometimes it was a huge, frustrating, infuriating process to get him to take the sugar substance. It wasn't until I logged onto a couple Diabetes forums, that I realized A) I wasn't alone and B) I was not fully understanding the frustration Greg was dealing with. Losing complete control of your body and mind for what seems like a long time is very difficult for anyone to deal with. Add in an overly paranoid wife asking 800 questions, losing her temper and trying to force sugar down his throat on top of not being able to communicate and a person is bound get upset. I learned that instead of crying, screaming, shaking him awake and asking him a million questions, that sometimes I just needed to trust in nature, put the juice, glucose tablets, or sugar loaded snack next to his bedside and wait. Sometimes it took a while, but he would usually come around and take it on his own. It didn't take my worry away, but it took away some of the bitterness and fighting in the middle of the night. Still, there were times when I would need to sit behind him and physically help him drink a glass of juice in the middle of the night.
Having two children, was worrisome as well. What if he had a low with the kids when he was alone? My daughter is not even 3...she would have no idea what to do, although we have begun to explain it to her slowly. What is he had a low when driving? He has had diabetes for so long that sometimes symptoms are not obvious to him. In addition, my husband is in construction. Up and down ladders all day, on stilts, on roofs. The list goes on and on. I worried a lot.
One day I was reading an article on the JDRF Facebook page about Continuous Glucose Monitors, or CGM's, in TD1 lingo. The more I researched it the more I realized that this would be a game changer for Greg, his health, our family and our lives. We called our insurance company and found out that it was 100% covered...happy days! The CGM is injected into his skin and take a blood glucose reading every 5 minutes, all day every day! When his blood sugars drop to a certain level of are too high, the monitor beeps to alert him. It is magical! From the moment he put this in, my anxiety, fears and paranoia immediately went away.
Being a relatively new piece of technology, CGM's are not without their flaws. Greg regularly has frustrations with his machine, particularly the fact that it beeps a lot...for a lot of different reasons. It has to sit just right in the skin, it has to be hooked up just right to his insulin pump, he has to sync it to his finger pricker (as we call it) at the perfect time, etc. If all of these things aren't done perfectly, the monitor could easily drive you crazy with the beeping :) It has forced him to manually check his blood sugar A LOT during the day because he is now obsessed with keeping his sugar levels within range. In the past 3 or so months, I have had to bring him a glass of juice only once. I can't begin to explain what a relief this has been.
On the way to our house is a brand new monitor and insulin pump...just passed by the FDA. This new pump will automatically suspend all insulin to the body when it detects low blood sugar. It is a MAJOR step in the development of the artificial pancreas. It has a lot of bug fixes as well and hopefully the learning curve will be a bit easier for my husband.
I have learned a lot about TD1 over the past few years, but most importantly TD1 has taught me to be more patient, more kind and more understanding. You must have a lot of patience and understanding when it comes to dealing with diabetes. You can't take offense to what is said during a sugar low...they don't mean it. Have trust in the person with TD1 in your life...be open with them about how you're feeling and they will be open with you. Remember this is something they HAVE to deal with every single day, every single minute of their lives...their lives depend on it. Be there for them.
Want to know what it's like to live with TD1 for a day? Take the challenge here: TD1 For A Day.
