What does it feel like to live with diabetes every day of your life? That’s certainly something no doctor can tell you. That’s the magic of blogging and social communities and all this Internet stuff that allows people to share their experiences — across the country and around the world.
Many terms come to mind: frustration, anger, exasperation, desperation, sadness, and hope. (Refer to yesterday’s post on “the inner game of diabetes.”)
I’m just feeling very grateful today for all the people like Andrew who are baring their hearts and minds and making me feel so much better understood and so much less alone.
Fellow D-blogger Scott Johnson writes:
“Feeling lost is something that comes and goes when dealing with a lifelong thing like diabetes… I also believe that when our blood sugars are out of whack, our chemical balance is taken for a ride along with it. This pulls and tugs on our emotions just as literally as a puppet-master pulling strings on his/her marionette.”
And when it comes to the many, many trade-offs we endure (that others without diabetes probably can’t imagine), Birdie puts it so simply and so well:
“Like should I really have that handful of crispy, hot, freshly made tortilla chips? Is the delight of them now worth the probable higher blood sugar a few hours later? … Is the desire for a longer walk with my dogs on a warm summer evening worth the risk of a possible low after bed because it’s out of my usual routine?”
I’ve just discovered the newest columnist over at dLife, Kathryn Foss, who writes in her flagship column after my own heart:
“The last three years have been quite challenging. I wish I could say that I had it all figured out and that I was a superstar diabetic, but the fact remains, that at the end of the day, this disease is HARD. It is constant and it requires patience and consistency. Some days I am the master of it and other days it totally kicks my ass. I have to take it day-by-day and meal-by-meal, but I am a fighter and I am determined to figure this whole diabetes thing out.”
I too have been reflecting a lot lately on how I FEEL about this condition, which so often seems a bigger obstacle than the condition itself. Crazy?
Over at dLife, they’ve just published my latest Straight Up column called The Biggest Change, which talks about how, YES, the diabetes changed everything…
It changed my sense of self, and my appreciation for the people and things around me. It changed the way I view social situations. And it changed the once-easy confidence I had in my own emotions (is that the diabetes talking?).
Nope, no way any doctor could have prepared me for all that.
You are so right about the emotional side of this disease. I’ve got 24 years under my belt and it’s not any easier today than it was when I was diagnosed. I am truly blessed to have an endo that is a diabetic and on the insulin pump. She really gets me and it’s something that I never want to take for granted. Life is good when you have a supportive environment that can get you through even the worst days with this disease…but it sure is nice to have a doc that tells me what she wants me to do and understands the ramifications of her requests. It’s taken me a long time, but I finally decided that, indeed, this disease is like a roller coaster, but instead of spending my life in constant battle with myself, it’s time to try and enjoy the ride…look where it’s brought me–to a whole new community of people that get me!
This why ‘Your Diabetes May Vary’ became my mantra.
A superstar diabetic isn’t one whit great numbers it one one who enjoys living their life and bring the diabetes along (kicking and screaming) for the ride.
The feelings of living the way we do are sometimes the hardest part of the whole deal. It is often more mental than physical, except that the physical changes (bg swings, etc.) can drag our mental state along with them.
I think that makes it doubly hard sometimes!
Reading your blog and those of other D-bloggers, I’ve come to realize that diabetes is SO different from the other invisible illnesses just because you really can see cause and effect even if you can’t always “control” it. After 30 years of living with invisible chronic illness (MS and ulcerative colitis), I still get ticked off when “healthy” people seem to “blame” a sick person for not doing more or a better job of getting better. If there’s one thing I have learned over all these years (and in my late 50′s I’m healthier than ever) it’s that it’s all about how we view this. The illness is something that happens to us, just like much of the crap that life dishes out. But we do have control over how we view it and what we do with our feelings about it. But it’s not a static road – things change, we change. Keep working on it, Amy. You’re doing a tremendous service to yourself, your kids and all who read your work.
I don’t technically have diabetes at this point but I’m pretty sure it is lurking in my future. I believe that I am at risk for it although my doctor thinks I’m just crazy. She says I worry about nothing, and basically rolls her eyes about my concerns whenever I mention it.
This issue started for me about a year ago when I was 30 lb. heavier than I am now (BMI was 25 before and it’s about 20 now). I spent a week with my mother and she let me test my fasting blood sugar with her machine every morning when she was doing hers. It was just a whim, I thought it was “fun” to test. I was surprised to find that most mornings my readings were actually higher than hers. I got readings of 6.7, 6.5, 6.4, 6.8, 6.3 etc. Not a single reading below 6 but no readings above 7 either, so according to my doctor it’s no big deal, I don’t have diabetes.
Because I was concerned all the same, I tried out a low-carb diet for eight months and lost 30 lb. I now regularly have blood sugars averaging 5.2 to 5.7 (I got my own home machine for testing since the pharmacy said I didn’t need a doctor’s prescription). My doctor still thinks I’m being ridiculous, said I wasn’t that fat before I lost weight.
My doctor wouldn’t schedule me for a glucose tolerance test because she said I don’t need one. So I volunteered for a research study on predicting diabetes on the basis of dietary questionnaires just so I could get a glucose tolerance test done. Results were even more frustrating. I apparently have perfectly normal blood glucose two hours after a 75g dose of glucose (but I tested with my own machine at the one-hour mark and it was 14.6…that cannot be good, even if it did drop back to 5.6 at the two-hour mark). My doctor said that these home tests aren’t all that accurate and besides, it’s only the two hour reading that matters.
Sigh…I would rather actually have a diagnosis than this “non-diagnosis” that I am pretty sure is a harbinger of future problems. I almost wish I could have just one fasting glucose test (at the lab) to come out higher than 7 so my doctor would take my concerns seriously. Apparently that is what it would take for her to think I’m not crazy.
By the way, I love this website, I hope you don’t mind having officially non-diabetic visitors dropping in
Oooh, your blog just makes me mad sometimes when you treat diabetes like such a huge trial and tribulation! Am I freak because diabetes never seemed that difficult to me?
Granted, you’re probably in better control than me with the constant diet policing and the use of a pump, but I’ve been a type 1 diabetic for over 20 years with decent control and it has never been that big of a deal. As long as my blood glucose isn’t drastically low I don’t have crazy mood swings, as long as I am carb counting and taking the appropriate amount of insulin to match I stay in relatively good control, even without much of the exercise that I know I should have more of diabetes doesn’t effect my life that much. I have the small annoyance of my routine shots before meals and that’s about it.
Sorry to lash out a bit. I do enjoy your blog content for the tips and reviews of equipment, but a lot of the poor diabetic me talk does get on my nerves.
Wow, Alex, I’m glad it’s not so hard for you.
Sharing feelings is not meant to be self-pity necessarily; the whole point is that having an online community means you can vent a little about how hard diabetes can be among people who “get it.” So please don’t lash out over that.
The hardest part for me is dealing with people who know nothing about the disease, and dealing with people who SHOULD know, but don’t. I checked my BG twice during a lecture, and my classmate said, “Don’t you just have to check 4 times a day? That’s what our book says.” I’ve had doctors tell me I am “obsessive” for checking 10-15 times a day, even though that is why my A1c is near-perfect.
The reality is that type 1 diabetics live on a knife edge. We are much, much more vulnerable than the average person with normal insulin production. I am not saying we shouldn’t be surgeons and Olympic athletes–we should. But, if I caught a nasty strain of the flu, even being generally healthy as I am, I could wind up in the hospital for days. Even being super-stressed can result in high numbers on my meter and all the horrible things that go with stubborn high BG–dry mouth, headache, feeling out of it.
Very few people understand that while I am a healthy, active person, I only have a small margin of error in terms of my health. Little health blips –a virus, mild food poisoning, even a bad headache or injury that leads to stress hormone production — mean BIG consequences for diabetics.
Lastly, I am sick to death of the lack of distinction made between type 1 and type 2 diabetes. It’s beyond ridiculous! Type 1 needs a new name. I have been insulted by nurses and other people who should know better telling me that maybe if I ate healthier I could “get off insulin.” The plethora of ignorant and insensitive comments I’ve heard– MANY FROM PEOPLE WITHIN THE MEDICAL FIELD — could fill volumes. I’ve heard some bona fide scary stuff from “diabetes educators,” too.
There is a severe shortage of people who “get it.”
I hate the word cure, but can we please get an islet transplant protocol cooking??? I am done with this stupid disease.
To amy T i agree with you i have had type 1 diabetes since i was 16 years of age i am now in my fifties and even my own family say you must have ate sugar etc!!etc!!you must have been fat!!!well i was always very slim when i was a kid never ate hardly any sweets or a bad diet was very fit and sporty and i was the only only one out of a family of five kids me ma and da and i was the unlucky one.It really annoys me when the television shows big fat old people getting diabetes but its not the same as junevile onset type one diabetes and they should be sued!!!type 2 is completly different!!!!ours is not our fault!!!
Hi Amy,
Your words echo how I feel about diabetes, and I’ve had it going on 37 years. You wrote so eloquently! For me, it has been a difficult disease to control; I have numerous complications. It is bad enough for me to deal with it; a random blood sugar revealed a grandchild has it too. I am so angry!
My A1 was 6.8. How do you bring it down. Thanks Kimm
I’ve been diabetic for almost my eniter life, and its the most emotional roller coaster i have ever been on. I was diagnosed at a fairly young age, for most of my life i haven’t known what its like to be “normal” when i was 9 years old i went to a camp, called camp banting and it changed my outlook on life, i was soo young and i didnt realize there was other people like me, what did i know.
thats a good one
i’d have to say that yesterday changed my life for ever, im 16 years old and i was told if i dont start taking care of myself i will die. But , everytime i get my a1c checked nobody understands you know? nobody gets that its the hardships of diabetes that make me hate it. But it also has its pro’s
gettting outta class, i mean i gotta say
but i think what makes me most perturbed is the face that type 1 is differnet that type 2. No im not fat, no i dont have type two, i have to say that too everyone, i mean i mine as well write ” IM A TYPE 1 DIABETIC” people still wouldnt get it thgouh.
Well I have always though of my self as the different kid out of the bunch. Witch I my hole life since I was 2 is when I was digonsed as a diabetic. I was in a coma for 3 days. But what I’m getting at is it never gets easy. Each day is a fight. Its so hard living with diabetes. Everyone points you out as that kid is a diabetic and when they get mad at you they will make fun of you for it. Not one day of my life has been easy. I want to be normal but it never will be/.