Every day, for me, is a 24 hour math problem

Coping & Support
1

Every day, or before I get out of bed, I immediately look at the clock. Every day, I have the same equation to calculate, with sometimes vastly different numbers. Then, there are some numbers that will never change much. 8,760 hours in a year. If I see my doctor every 3 months for a 15-minute appointment, then there are still about 8,759 hours a year that I am on my own to manage my diabetes. I am constantly sorting, adding, subtracting, multiplying, estimating all of the numbers and variables needed to maintain my health and my life.

The equation begins with my blood-sugar test results. This can range anywhere from as high as 350-400 mg/do (milligrams per deciliter), or as low as 20 mg/do, depending on many possible random factors. Sometimes it is even in the normal range of 80 – 120 mg/dL.

Then, regardless of the results, I take my daily 23 units of Lantus, a time release insulin, keeping track of the time I inject it, because of the roughly 24 hour duration of the Lantus and possibly “over lapping”. I try to take it at the same time everyday so I don’t “overlap” yesterday’s shot which can cause unexpected low blood-sugars. This number doesn’t change. It is supposed to last 24 hours, based on what I am supposed to eat.

Next, I prepare my “sliding scale” insulin, Humalog, with as many units are necessary to cover the amount of insulin I need to lessen the spike of blood-sugar I will get from whatever I will have for breakfast, plus a little more, depending on the reading I get with my before breakfast blood sugar test.

When I eat breakfast, I must add to the calculation of how many carbohydrates and proteins I am eating, how long what I eat will last before I might have to eat again, based on what type of physical activity I will have before lunch and how much Humalog I just took. Whether or not I “overlapped” on the 24 hour Lantus shot from the day before. I may not even feel the affects of an ”overlap” for a couple of hours, when I might get surprised with an unusual low blood sugar reading before lunch and have to either grab some juice, or whatever, to bring up my sugar in a hurry.
I often have to eat a snack between breakfast and lunch, but I don’t always have something handy, because of what I happen to be doing, or where I’m going, I forgot to bring something, or I just don’t have anything to bring, due to a lack of money, sometimes. I try to always try to keep a can of fruit juice handy, or some kind of candy with me for emergencies.

At lunch time I go through all the same calculation of my blood sugar reading, and taking the necessary amount of Humalog based on what my blood-sugar reading is how many carbohydrates I will eat for lunch, what activity I will be doing and when I might be able to eat next. I do all of the estimates on the time I ate lunch, when I might eat next, what I am doing, or going to do between lunch and dinner.

Around dinner time, I repeat the whole routine again. The sticking of the finger to test my sugars, to taking my sliding scale insulin, to eating a calculated amount of carbs, all over again.

Before I go to sleep I check my sugar again. I then have to try and have it at least 180 mg/dL, because that way I feel more confident that it will be close to “normal” as possible in the morning. I go to sleep in the “normal” range of 80 – 120 mg/dL, I will wake up soaked in sweat, weak and unable function easily, or at all. I then have to reach, or walk, or crawl to the closest source of sugar I can find, like a can of fruit juice right away. Right away.

Then, all those numbers and calculations get put into a computer called, “the A1C”, where they are tallied up. In the end, the answer is seldom “correct”, but close is usually “good enough”.
I was never that good at math, anyway.

2

Hi Pete,
It sounds like your frustrated, and I certainly can relate! It truly can be overwhelming at times, micro-managing your own endocrine system… I really think tou should consider a pump. You certainly have to put in effort to tune your ratios, but once you do, everything is so much easier. No over thinking, no overlapping. You can go to sleep at night with a blood sugar of 90 and wake up at 85, with no lows in between. You’re working way too hard to not have better numbers!
A CGM couldn’t hurt either!
Cindy

3

I’m glad I’m not the only one who has to bump up bedtime blood sugars to avoid morning lows. When I was on NPH I had the opposite problem; I wasn’t allowed to sleep in because my blood sugar would get too high. But on lantus I need to be at least 150 before bed or I risk a low blood sugar in the morning. Because of course it doesn’t actually work steadily for 24 hours. Peaks after 7 hours and wears off after about 22 for me. It’s so frustrating!

4

Absolutely Cindy, I hadn’t thought of it that way, but you are so right so say that we micro-manage our diabetes. Before exercise, I must go higher than I want and eat more than I want to keep from going too low. It is such a tight rope to keep from falling off. I wish you well Pete

5

Pete, there is no way I can lessen your frustration with T1D because it is a miserably frustrating disease. But I may be able to help to lessen some of the sources of your frustration. I’ve been T1 for just about 65 years & so have gone through it all from having only regular insulin available when I was 5 to having a pump & a continuous glucose monitor for about the last 15 yrs. There are smartphone & computer (free) downloads of programs that will calculate the CHO content of a meal, snack , etc and some can also calculate insulin requirements based on the info you feed the program. That’s the cheapest IF you have the computer or smartphone. The most expensive way to deal with calculations is using an insulin pump. The pump does all the calculations re: insulin but you still need a program for calculating CHO in your food. If you want specific programs, comment on my comment & I’ll respond (and I’m sure others will respond as well) with sources of programs.
Good luck, you have lots of empathetic & sympathetic company & many with much experience in dealing with the same issues.

6

Thank you for your post to help me better understand the undeniable challenges you face. My daughter is dating a young man that is TD1 (diagnosed 2 years ago at age 20). I see how overwhelming it is for him and I share her frustration with how to support him. He is unwilling to talk about it and answer questions, yet he depends on her for so many things. She is the one that awakens when the alarm goes off in the night and has been by his side at the hospital more than once. Since we are walking on eggshells to ask questions, we try to read and learn from other sources. If we make a comment or even ask a simple question like, “should we bring a snack with us?” he gets angry. He says nothing makes him madder than people that don’t have the disease making suggestions because we can’t understand. It’s a very tough place to be in. He isn’t open to support groups, counseling etc. I worry for my daughter who wants to carry on a relationship with these circumstances. They have been dating for a year already and I hope time and maturity will continue to help. Thank you in advance for any comments and suggestions anyone has for my daughter and/or myself.

1 Like
7

Wow, 65 years. That is a lot of peeing on test strips and bread exchanges, for sure. I have been type one since 1974.
Thanks for your suggestions about the pump and the CGM. I have talked to my doctor about the CGM a few times, but I am unable to work and am staying at a friend’s house, living on food stamps and have to rely on Medi-Cal for my health insurance, I don’t qualify for either the pump, or the CGM because they won’t pay for it. I appreciate yours and others empathy and sympathy, but I didn’t mean to sound so dramatic.
I wrote that piece (24 Hour Math Problem) after my therapist asked me to describe my daily life. I think we all can relate to the kind of frustrations that the average, non-type one diabetic, doesn’t know we all have to deal with behind the scene every day.
Thanks for your support

8

There is much wisdom to be gained on these support groups. Perhaps he is in denial at this point as many of us have experienced this reaction. When I was diagnosed, I didn’t believe it and thought that it wasn’t a serious disease requiring much attention. Maybe your daughter can just quietly put snacks in her pocket and bring them out when needed. It is fantastic that you are supportive. there is a book called Think Like a Pancreas that you can check out from the library. This book is written by a man who has type 1 and written in clear language that will help you further understand the disease.

9

I can, and I’m sure others can relate to his getting angry when you ask him about bringing a snack. I tend to, when my sugar is low especially, react that way when people ask, “Are you OK? Is your sugar low”, or, “should we bring a snack with us?” I often feel like others think I am dumb and don’t understand that I might need to bring something like a “snack.” I know that people like you just care and are not treating us like children, but that is how it feels sometimes.
I was diagnosed at age 15, right in the grips of puberty, but I NEVER had any psychological counseling and wish I did. I now am trying to deal with 42 years of frustration trying to do the right thing on my own. I would strongly suggest that he get some kind of help in that way. It really will help him understand the things he might face with his T1D that affect his moods.
There are plenty of good people here on this site who can help him, for sure.
Good luck

10

Thank you Pete. Making him feel like that is the very last thing I want to do. I am encouraging my daughter to get counseling and maybe that will help her personally and open some more doors for them as a couple. She has read some posts on this site and shared with him, but at this point I guess he’s just not there yet. Thank you for your reply. I appreciate your input.

And Thank You Karen. She has been doing that and I will encourage her to continue. I will look into the book you suggested. Thanks again.

11

I think I forgot the “adrenaline rush" part of the equation. When you exercise, or do some kind of physical activity, without warming up, you can cause your body to go into the “fight or flight” mode and can actually raise your sugar as well. Blood vessels to the intestines and kidneys constrict and the liver releases stored sugar into the blood. If you work out too hard, too fast, it can have the opposite affect that you had intended. Skydiving raised my sugar, but it is worth it.

12

Well, I was pre-peeing on test strips. I or my mother you to carry a small chemistry set & a shot glass. I’d pee in the shot class & then with a little eye dropper, a test tube, some water & Clinitest pills perform a magical experiment to watch the liquid in the tube change color. Actually it was kind of neat! Anyway, I’m glad I gave you some help. The bad news is that you’re still diabetic but the good news is that there are many resources out there. Have you tried contacting directly the suppliers of your supplies? Sometimes they give supplies including pumps for free for people in need.

13

As for the individual worried about her daughter & her boyfriend-I know I seeth when my husband asks me if I’ve tested my BG and have my candy before we go out (& this has been happening for 43yrs). My advice is let your daughter & her boyfriend handle all that & you contact an information source to learn all you can & especially how to best relate to someone who lives with DM.

14

@emeraldbay, I’m really sorry you guys are going through all that. I wish I could offer some advice, but I think he just needs time. I’m sure we’ve all been there. My mom used to tell me to check my blood sugar whenever I got angry or upset, which was infuriating in and of itself. And I hated the suggestion that I meet other diabetics because it made me feel like a leper. Obviously I’ve changed my mind since.

15

Thanks Cindy, I appreciate your suggestion for the pump. I have struggled with the idea of the pump for many years. I have a sister who uses the pump and she likes it. The problem I am skeptical about having to rely on a machine, that might break, or malfunction, to get my insulin. Seeing all the people here who use them without those problems encourages me to get one. I think I might benefit from a CGM too. I don’t really mind the needles, I’m used to it. After all, I have done it around 3 times a day for 42 years. (30,000+ times)

16

Hi emeraldbay, I completely understand where your daughter’s boyfriend is coming from when he feels offended that other people make suggestions on how he should best manage his condition; it’s basically saying he isn’t capable of doing it himself and you know better than he does about his condition. I remember in the earlier years of having diabetes feeling insulted when people would ask, “Do you need to eat”, or “Do you have food with you?” I was 23 when diagnosed, and took care of myself from day 1, and how dare they imply I was too immature or too stupid? That said, I DID take care of myself and in the over 30 years of having diabetes I have never once been in the hospital with unmanageable highs or lows. That’s not to say that you can’t end up in the ER even though you do everything you should, but it does not need to happen numerous times in 2 years. It sounds like this young man is in a little bit of denial, and unfortunately you or your daughter making suggestions to him isn’t going to change that. I would suggest that if it makes you and your daughter feel better, keep some little tootsie rolls in your purse (these are great for low blood sugar.) You don’t need to ask him if you should or tell him that you have them. Then exercise a little “tough love”. Your daughter should make sure he knows that his diabetes is HIS responsibility, because it is, and ultimately he will have to take ownership of it, and the sooner he does this the FAR better off he will be.

17

I have a similar problem. I am also taking Lantus & Humalog. If my blood sugars are any lower than 10 before bedtime I have to eat something extra even though I have already had my snack or they will be low in the morning. I am taking 19 units of Lantus before bed. If I cut back to 18 units they run too high all day. It am also terrible with math. I am eating 125 carbs, but I am having a difficult time with how much insulin to take. I am trying to switch from a carb. counting to calorie counting (1500) in order to lose weight. Any ideas?

18

Hello @Managing1 Kathryn,

Carbs and calories are not mutually exclusive, in my opinion you will have to count both. Carb counts will tell you how much insulin to take, and calories will tell you if your total food intake is above or below your target

All carbs have calories, but not all calories have carbs(simplification but you get the general idea)

It sounds to me as if you are “locked in” to eating 125 grams carbohydrate every day. I have to say that this is not necessary. If you learn how to use insulin, and get some medical support from a diabetes educator or endocrinologist, you can use carb ratios to only inject insulin to cover the carbs you are eating. This is much more flexible and will help you in your plan to lose weight.

Please consider reading the book “Think like a Pancreas “ or another book “Using Insulin “. The information will help you.

You don’t have to be good at math you can use a calculator. Good luck.

19

Thanks, Joe. I have been trying to count both, but it is very time consuming. My diabetes education director gave me a sheet on using carbohydrate percentages. That has been helpful I hAve to keep a food scale & calculator with me at all times. I’m okay as long as I use that sheet, but I have to keep it with me. I am finding that I wasn’t eating enough & was having a lot of lows during the days as well. It’s amazing how few carbs are in strawberries. My biggest problem is with the lantus. I can’t seem to find a happy medium there. Of course when the blood sugars are low I have to use dex 4 or eat something which kind of defeats the purpose of trying to diet. I have m.s. as well, & I am in a wheelchair. It’s difficult to get much exercise.

20

Hi Kathryn, I agree I could never get my lantus shot correct either. Many people find that splitting the lantus into 2 shots works better than 1 time per day. Trying to get a good basal rate was the thing that drove me to get an insulin pump which works very well for me.

With losing weight, you’re right taking even a little too much insulin means having to eat carbs and that makes weight loss very difficult. When I want to lose weight, I take less insulin and eat less carbs. The way it was explained to me was big carbs plus big insulin means I’ll get big.

Counting carbs starts with a good reference such as the “Calorie King” book or online database. Each food portion is listed with estimated carbs. It can be very helpful.

A wheelchair makes it hard but there are many chair exercises and chair yoga to consider. Movement tends to be good for you.

I hope your Endo checks thyroid once in a while. It is common to have low thyroid with type 1 diabetes. Low thyroid makes weight loss very difficult.

Good luck please tell us how you are doing.

1 Like