My story

I was only diagnosed this year, at the age of 18. I’ve been struggling with it a bit because I had high sugar for a while then it evened out but now it seems to be high again. I don’t know what to do. Please help.

Hi @Sophie,

Welcome to Our World of T1D! Yeah, none of us wanted diabetes but together we can make life more bearable by sharing little things that we do to live a full life.

My single word of “help” for you is RELAX. Certainly you are going to have many occasions when your blood sugar levels go high and occasionally very high, and other times when your blood sugar drops suddenly. As time goes on you will develop a 7th, 8th and 9th sense and almost automatically “feel” what your body is doing and instinctively know what to do to get yourself back in line. What we call MANAGING my diabetes; I say “managing” because we can not really control T1D. With your high BGL [Blood Glucose Level] as well as with your low BGL your stress levels will kick in and exacerbate sugar management - very often, it can be the other way around where stress, hormones, excitement, will cause your sugar levels to rise.

To expand beyond my “relax”, I suggest that you keep an eye on what you eat. YES, you may eat almost any [healthy] food but be aware of quantity and try to remember in what ways different foods affect your BG; some foods push my BG very high quickly and then it drops, while other foods react in me very slowly - sometimes pushing me high several hours later. If you use MDI [Multiple Daily Injections} or a pump and count carbohydrates, try carefully counting the carbs you eat and take the appropriate amount if insulin to cover that food. The hardest food for me is french fried potatoes - I need insulin for the carbs in the potato as I’m eating and then three hours later need more insulin to counter the BG rise caused by fat; yeah, after 60 years using insulin I’ve finally smartened up and very rarely will eat french fries.

My wish for you is a happy, full life doing everything and accomplishing whatever you desire. Don’t short yourself on exercise, be healthy and active.

I’m so sorry. Being your own pancreas is a tough job. I would ask your endocrinologist for a CGM that you can wear for 3 days. You can then download the data and review it with her. It should help you figure out patterns - what time of day you might need a little more insulin, whether you need to bolus 15 min or 30 min before a meal, how exercise or sports impacts your bg, etc. Also, be aware that most women need more insulin around their menstrual cycle each month; for some almost double the amount (frickin hormones).

I was diagnosed in 1945, when I was 6. I had bad highs and lows many times until I finally had a glucometer in the 1980’s. I did not know about carbs, and their impact on blood sugar, until 1988. In the 1990’s I started using better insulins, and bolusing with carb counting. That is when I began having better control. An insulin pump in 2007, and a CGM in 2015 has me with A1c’s in the 5.8-6.4 range. All those highs and lows in the past did not cause me any serious complications. I do have some neuropathy, but no other complications.
I am telling you all of this to let you see that unstable blood sugar for some years after diagnosis may not have any long lasting effects. If you are very careful to educate yourself on all the important issues related to diabetes, and you get help from an endocrinologist and experienced diabetics online, you can improve your control. Take it one step at a time, and improve in a gradual manner. Don’t expect a major improvement in a big hurry. I have been type 1 for 71 years, and I am a healthy diabetic. In the 21’st century the life expectancy of young type 1 diabetics is almost as good as it is for non diabetics.

Hi Sophie,

I was also diagnosed at the age of 18! I know it is a shocking diagnosis, but I promise that you’ll get the hang of it. It may all seem very scary and foreign now, but type one diabetes can be very manageable! I think the best advice I have for you is to be very open and honest with your doctor. My endocrinologist has helped me through a lot of roadblocks, and constantly speaking to her about my struggles has helped me lead a healthier lifestyle.