What’s it like to have diabetes?

Someone asked me this the other day in the context that it didn’t seem like it was such a “big deal” anymore.  And as much as I was annoyed at the statement, I have to admit that I can see how someone who isn’t affected personally by the disease would think that.  In fact the message of the team I am a part of is to show that you can do anything you want to despite living with the disease, as long as you take the time to control it. And that, right there, is the key: “As long as you take the time to control it.”

So maybe the question should be “what is it like to control type 1 diabetes?”  That’s the question I will answer today.  Keep in mind that I’ve had the disease for nearly 25 years and I don’t remember what it was like not having it.  I suspect one who has lived a longer portion of their existence without it might feel different.

Just a few bullet-points to get started:

  • Assuming I test my blood sugar on average of 8 times a day, that means I have poked my fingers approximately 73,000 times over the years.  I only use my left hand because I’m stubborn and got it into my head when I was a kid that I wanted one pain free hand.  Of course, that was before I ran out of real estate after poking my (very small) fingers 73,000 times, but I still haven’t given in and poked the right hand.  This is what my fingertips on my left hand look like (forgive the dry hands, I swam this morning before work and forgot my lotion):

 

  • Shots:  Assuming an average of 6 a day, I’ve taken around 55,000 shots in my lifetime.  Shots really don’t bother me.  They don’t hurt, except for occasionally when I get a bad angle, but people that don’t have to take them tend to be scared of the prospect of having to take a shot, so I list it only for shock and awe purposes. 
  • Money.  I spend, out-of-pocket (meaning not what my insurance covers) about $150/month on diabetes related supplies.  I quite honestly don’t want to know what the cost would be without insurance – that statistic would scare the crap out of me.  But at $150 a month, that’s around $50,000 over the course of my lifetime, thus far, out of my parents’ and my pockets.  Yikes! 
  • Time.  This is a tough one to quantify but the time spent dealing with the disease is pretty significant.  From Doctors appointments, to time spent in the pharmacy, to time spent on the phone fighting with your insurance company, to time spent learning how to use new devices and medications to time spent planning…it’s a lot of time.  

And speaking of planning, oh the planning!  As a type 1 diabetic, I am forced to be a planner.  I can’t just leave the house to go do something (anything).  I guess I could, but if I did, I would risk death.  I have to, at all times, make sure I have some form of sugar with me in case my blood sugar goes low.  And if I’m leaving for more than an hour?  I need sugar, I need my insulin and I need my blood sugar meter.  Leaving for more than a week?  All of the above, just a lot more of it and spares (and I won’t even get into the additional planning I face as a celiac diabetic trying to travel, or for that matter, a diabetic, celiac triathlete – it’s kind of ridiculous).  And this makes me think about…my brain. 

I have not, for almost 25 years, spent a day without having to plan for and think about diabetes — that is a lot of time thinking about one, particular thing.  It’s no wonder that there is such a high rate of eating disorders amongst teenage girls with type 1.  From the moment we are diagnosed, every morsel of food we put into our mouths is monitored.  Are we eating too much?  Not enough?  Did we take our insulin?  Don’t eat until you take your insulin!  Did you test before you ate?  We are hunter gatherers by nature — we aren’t meant to think about food that much!  Couple that with today’s societal pressures on young girls, and it’s a disorder waiting to happen.  But I digress.  The point is that every day is another day I think about diabetes: there’s the constant monitoring of sugar, gauging proper insulin levels depending on carbohydrate intake and exercise, the remembering of the supplies, going to the pharmacy, going to regular doctor appointments, the list goes on and on.  I have to do all these things to keep my blood sugar under control so I can lead a “normal” life.  Imagine spending every day of your life doing this?  Every day.  There is no break.  This is my life.  And even though I do all of these things there is still no guarantee that I will live without complications down the road because as under control as my diabetes is, it’s still there and it’s impossible to be “perfect” so there is still risk.

 And then there’s the bad days.  We don’t like to talk about them, but they do happen.  Let me give you an example of one that I had a few weeks ago.  I got up at 4:45 am to swim.  Got to the pool, swam (a “hard” swim), got out of the pool, tested my blood sugar and was high as sometimes happens to me when I swim “hard.”  I took some insulin, drove home and hopped in the shower.  I was a bit late so I was rushing to catch my train and in my haste, forgot to eat a banana before I left, which I was planning on doing and had dosed for.  As I left the house for my 20 minute walk to the train, I became engrossed in my Blackberry (work) which continued as I boarded the train.  Typing, typing, typing and before I knew it, I was feeling hungry and weak.  Crap – I’m low.  Normally no big deal but my blood sugar was dropping so fast due to the amount of insulin I took, the walk to the train and the lack of banana, that my body had decided it was in danger and so I began sweating profusely (on the train, yes, so people were staring at me) to the point where I looked like I had just gotten out of the shower.  I had long since eaten a pile of glucose tablets but the after-effects were in full force.  It was around 20 degrees out and now I’m drenched in sweat and about to walk to work in the cold.  My clothes were damp, my socks were damp, my hair was wet — and then I had the pleasure of sitting at work like this for the rest of the day, damp and freezing.  All this and I had a hard bike ride to get in later that night – guess who was lacking motivation for that?

 Oh, and how about this example.  Every night I take a long-acting shot of about 18 – 20 units before I go to bed.  This is a slow-release basal insulin that works for 24 hours to maintain my blood sugar.  Well, one night I accidentally took my short acting insulin instead of my long acting insulin and went to bed not realizing it.  Short acting insulin is what I take when I eat food.  For example, for a banana I would take 1 – 2 units, depending on the size of the banana.  I woke up about an hour later drenched in sweat, barely able to walk and very, very confused.  I was lucid enough to know that my blood sugar was low so I grabbed some glucose tablets (sugar), some juice and waited for my blood sugar to rise.  It didn’t rise.  So I ate more glucose tablets (about 15).  I should have figured out the insulin mixup at that point but it was late and I was tired so when my sugar finally rose to about 85, I went back to bed thinking it would continue to rise….and then woke up 30 minutes later in the same manner I had before – drenched in sweat, confused and barely able to walk.  That’s when it hit me what I had done and I spent the rest of the night forcing down massive amounts of food until I was sure my sugar was high enough that I wasn’t going to die in my sleep.  I think I finally got to bed around 3:30 am.  And when I woke up a few hours later, my sugar was 380 (quite high) because not only had I just eaten about 9 million grams of carbs but because of the insulin mix-up, I hadn’t taken my long-acting shot so I had no basal insulin running, so, the whole next day was a total mess.

 I won’t get into what it takes to be an endurance athlete with diabetes – that’s a whole other ball game, but I think you get the point.  We preach the virtues of good control, because good control is worth it and we may have come a long way with technology and the methods available for us to treat the disease, but that doesn’t change the fact that managing diabetes is hard work.  It may not look like it sometimes but trust me, it is – even after 25 years. Sometimes I think we need to give ourselves a break or, dare I say, credit for that!

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34 Responses to What’s it like to have diabetes?

  1. holisticguru says:

    You are awesome. I sometimes forget how much more work has to go into your day to day planning and training. Thanks for sharing!

  2. Robin says:

    Amazing. Thanks.
    Robin 29 yrs old
    Type 1 – 24yrs and counting.

  3. Colleen says:

    Such a great post Patricia. Really gives people a glimpse (albeit very small) into the daily life of a type 1er. :)

  4. KateK says:

    And to think that this isn’t even a bad day for you……you are not mortal. WOW!

  5. Dylan says:

    No doubt. it’s so frustrating that people think diabetes is no big deal because we are in generally good health. Most people don’t realize that it’s a full time (well, worse than that, since it’s 24 hours a day instead of 8) job in order to stay that way, on top of the rest of our lives.

  6. Great post, PJ. I’ll save the link for when I need to explain to someone.
    I had a guy say one time when he thought I was making excuses, “But you just check your blood and take your shots and you’re fine, right?” Where do I even start replying to that? I just said, “It’s not that simple.” and stopped talking to him.
    By the way, a little while back I did the math and figured over the past 25 years I had tested more than a gallon of my blood, one drop at a time. Of course, it would have been more if I had a meter before that.

  7. SKDickey says:

    This is a great look into what you have to do not only on a daily basis but even further underscores your commitment to endurance sports. I had no idea how difficult this is!

  8. Leslie says:

    Great post. My 8 year old son has Type 1 diabetes, he was diagnosed when he was 4, and I hate that this is part of his future life. For now, I try my best to ease as much of the burden for him, but their is only so much I can do, it is, in fact his body and his disease. Thank you for your post!

  9. Steve Wilson says:

    I feel that. Type 1 as well. It does add to your life. No doubt.

    http://www.hillsandheadwinds.blogspot.com

  10. Steve Wilson says:

    I feel you. Type 1 too. Sure DOES add to your life.

    http://www.hillsandheadwinds.blogspot.com

  11. DAK says:

    Thanks!!! I could totally relate, I did the same thing one night with my lantus and humalog! Type 1 15 yrs. now and training for my 4th marathon, you go girl!

  12. Jim Jordan says:

    Before they change the Lantus bottle I did the same thing. Mix up the Humalog and the lantus.
    Now I have a syringe with the Humalog.
    If you goto a hospital make sure that one of your caregivers is a Diabetic. They will understand what is going on. I have had a number of problems with hospital personnel that will not except that you know your condition. One time I crash because they would not listen Surgar was 30.

  13. Proudhydromom says:

    I am not an amazing athlete but I am type 1 (on a pump) with a 7 year old son with hydrocephalus. His doctors are 2 hours away and the new car I got in june has over 11000 miles today. I have to plan for both of us. Awesome story – I know a lot of people who need to read this. 39 years & counting :-)

  14. Scott says:

    Living with Type 1 is like walking a type rope. Sometimes you fall off one side and go high, sometimes you go low and fall off the other side and sometimes you stay on and try to make it to the other side without falling…but you always fall…always. However I am always looking at making it to the other side without falling whether its cycling a double century or playing college tennis. Diabetes has made me persevere in all aspects of my life.

  15. Scott says:

    I mean tight rope…better check my bg

  16. Dana says:

    This is a great post. My 10 yr old daughter was diagnosed with Type 1 a month ago and all I hear from people is how I am lucky that is all it is. Yes, I do agree with this but they have no clue the amount of time and effort has to go in to making sure she is OK 24 hours a day. I hardly sleep, and even when I am not with her I am figuring out what she will be eating and how to compensate the insulin with the meal. It breaks my heart that this is a lifelong disease and I can’t change that. I am only a month into it and I feel like it’s been forever already.

    • Melinda says:

      Such an inspiration. My 3 yr old daughter was diagnosed at age 2. This post makes me so sad of the life Type 1ers have to live but you are an inspiration because this damn disease has not gotten the best of you. It means so much that you shared…thank you

  17. Jamie says:

    This post is kinda awesome.

    To be honest, sometimes I forget that you’ve got diabetes. Maybe because you don’t wear the disease on your sleeve like a bunch of other diabetics I follow on Twitter…

    But then when I’m reminded about it and it reminds me how bad-ass you are and I realize that there are probably a million other night sweat stories like this that you never talk about, but still continue being your bad ass triathlete self.

  18. Joe says:

    Right on description, Patricia, and eerily similar to my experiences as someone who’s been a T1d 30 years and counting. I would add another bummer about this disease that has chosen us, and that is the significant effect it has on our mental health–moodiness, depression, inability to concentrate–all T1d’s know what I’m talking about. For me, it’s one of the worst parts of the disease.

  19. Natasha Weldon says:

    Thanks for your description Patricia. Sometimes I need to read somebody elses description to remind me of how awesome I am…lol. I, like all type 1′s live on this tightrope on a daily basis – however I am one of those you subscribe to at the beginning of your post – I’m 41 years old, but was not diagnosed until I was 35. I don’t have LADA, I have type 1, my symptoms came on over a matter of 6 weeks. I can’t describe to you how frightening the huge adjustments I’ve had to make are, and I often get them wrong – so many times I want to remember what it feels like to just be able to eat a meal without dissecting it into carb values…but thank you!

  20. jo says:

    I have had Type 1 diabetes for 40 years and have had several blood sugar lows requiring medical help. As was written, it is a 24/7 condition, and no free days for good behavior! RATS! Sometimes I am high or low for no apparent reason and it may stay that way all day even with great attention to the details. My body is not a machine, and there are times when the workings just become bothersome. I’ve made it so far without too many complications, but as it is said, tomorrow is never promised to any one. I have good reasons to look forward to tomorrow because I have much to complete before I leave. I’m too old for pumps, but I can hardly wait for new technologies as my mother, several close family members, my children and grandchildren are all affected – nothing would make me more happy! I live with it, but it does not define me. Am I a diabetic or a vital person who has diabetes, or both? Take your pick.

  21. Mary says:

    Good postings. I want to say though that it’s not just Type 1. I have had Type 2 for 20 years and injected insulin for 2. I also take 4 shots a day and test multiple times a week. If I want to eat then I have to think about diabeties and what is good for me and what is not. It’s an everyday lifestyle.

    • Peej says:

      Hi, Mary. I just wanted to note that I wasn’t excluding any Type 2′s from these thoughts. I just happen to have Type 1 so can only relate my own, personal experiences to that type.

  22. Sharyn Black says:

    I was diagnosed with Type 1 diabetes when I had just turned 16! This is an awkward time of one’s life at best. There was only one diet drink at that time–that nasty “Tab”. There was also no glucose testing device. It was the day of the ever-popular “Clinitest” urine testing method. It was mostly inaccurate and a definite inconvenience! Well, time passes and in spite of it all, things improve. Now, I have a glucometer and an insulin pump. I also use sensors that check my blood sugar every few minutes and report it to the pump. If it is too high or too low, it emits a sound that warns me so I can deal with the situation. I am very fortunate to have all of these medical aids. I have good insurance! I have come a long way. I am 64 years old with none of the complications that may accompany this medical dilemma–diabetes! Like the rest of you, I am waiting on the cure!! Be ready for it!

  23. Gui says:

    Oh God please do go on. Very good to read this. So… I’m not alone! Although the tri thing. hmm, can’t really relate there.
    more!

  24. Ive had T1d for 42 years and counting. Last year I mysteriously developed Celiacs and that has been more of a challenge than my diabetes. But since i went on pump therapy 13 years ago, my life changed is so many great ways. Now it’s me who is in control of my life, and not the diabetes that’s controlling me. Keep up the hard work of all that juggling, I admire you and your personal strength.

  25. Pingback: Around the Diabetes Blogosphere — January Edition : DiabetesMine: the all things diabetes blog

  26. Heather says:

    wow. Can I thank you, and thank you again? I have type 1, and a 15 year old daughter, also type 1. (imagine 2 women in a small house, both with high blood sugar and PMS at the same time;) can get ugly)
    we were both diagnosed while I was pregnant with my 2nd, 4 years ago.
    I cannot fathom the training and races you do! What an inspiriation!. I reposted your entry to facebook, Whenver anyone spends a day, a camping weekend, any significant amount of time with us, they always exclaim “I had no idea you had to do so much!” or “the planning!” most think, oh, it’s JUST diabetes. I try not to complain, but am grateful for people to have perspective!
    you truly are an inspiration.

  27. Rose Kennedy says:

    WOW! Great story! T1 has been with me for nearly 52 years and only JUST shared any details of my diabetes with a few other people. Everything in your post wrang true. If I had the time or space here and now, I’d fill in the pre-glucometer, pre-Clinitest tablets, pre-disposable syringes, pre- human insulin, pre-glucose tabs, pre-diet any foods, even pre-disposable alcohol wipes, and many more life- with-T1 details that so many of us all share. I congratulate you on a life well-lived, and every single day, I pat myself on the back! Love to all of you.

  28. Lydia says:

    My 12 year old t1 daughter was commenting last week that not to belittle people with cancer (I had cancer and chair a Cancer Resource Center) but that cancer can go away and a cancer patient can take a day and not think about cancer or have any treatment, but that my daughter does not have such luxuries. It is a 24/7 disease. The need for organizational skills can be overwhelming and I am in such awe of so many people who seem to make it run so smoothly.

  29. Missy says:

    Wow great story….our son was diagnosed 3 years ago at the age of 10. I would never wish this on anyone. We take great pride in the fact that he takes care of most of his stuff. I monitor and email in sugars every few weeks. We are blessed with such a great kid. Thanks for you post.

  30. mary schutzman says:

    Thanks for your wonderful discriptive post! My daughter has lived with type 1 for 9 years and is now 17. She is a varsity runner in high school. Very few really understand what it takes to run much less compeat on the varsity level.
    She got second place in the state track meet this past season as the 3rd leg on the 4×400 team. That day we beat diabetes!!!

  31. Mike says:

    Wow, thanks for this. I had no idea it took that much planning and monitoring.

  32. Caitlin says:

    Thank you so much for writing this! My sister has T1 and has had it for about 7 years, it is very hard to sit by and not be able to do anything! I feel just absolutely horrible that she has it and had to deal with it always, all I want is for there to be a cure. Again thank you for sharing this, it was written amazingly to help explain what you go through. I honestly believe that the people that this disease are some of the strongest people in the whole!!

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