I’m new to all this, but not new to diabetes I was diagnosed 8&1/2 years ago and have never had a good A1C result. I’m sitting my GCSE’s in summer and know that if something doesn’t change they will be impacted, but when everything gets too much it’s easier to just ignore my diabetes and then I don’t know how to make it right again when I miss days of tests and it just makes me feel like a massive failure.
This is not a failure on your part. This is a basic mindset that Medical “Science” has used for decades to pass the blame onto you as the patient. I have been a T1 since I was 8 years old. In the first 17 years the doctors would repeatedly tell me I have to control my blood sugar.
I am not stupid and recognized fairly early that in order to control a process that millions of years of evolution has perfected I would need a better feedback than content of sugar in my urine.
That was a long time ago, you are experiencing the “latest technology” that has it’s roots in a product that has been available since 1985. The insulin you take and the testing method (your blood via CGM devices or just interval testing with say Accucheck test strips) is expensive and require constant monitoring.
Don’t feel guilty or ashamed that your A1C doesn’t make the grade. I have been doing this for 48 years and I have NEVER hit my A1C target. I don’t have the right tools and neither do you.
The good news is if you stay the course, try to eat healthy and figure out what impact exercise, diet and insulin combination works to keep you close to a stable 110 to 150 blood sugar value during the time periods when your body is processing neither food nor fast acting insulin you will survive. The doctor that first treated me in 1967 told me I would learn to give myself shots or DIE! was right. The rest is details. After 8 years you have already gotten more real-time experience dealing with this than ANY doctor. That doesn’t mean you know it all. It just means you have a basis of experience in what works and what doesn’t. CGM systems are a tremendous aid in this.
I see that I have turned this into a lecture bordering on a rant. Apologies if I’ve offended anyone here.
Don’t give up. There is a movie from long ago called “On the Beach”. It was a sad tale of the post-nuclear apocalyptic world with an appropriate line. "Don’t Despair."
Keep those words in mind and give those GCSE’s your best effort.
I struggle to understand how I know that my diabetes can kill me and already nearly did when I was diagnosed, yet that still isn’t enough to make me want to do my tests. It makes me so frustrated and angry with myself because I know that when I do test my results do improve gradually. I just go round in vicious circles constantly and don’t know how to break the cycle.
I struggle to understand how I know my diabetes can kill me and already nearly did when I was diagnosed, yet it still doesn’t make me do my tests. I get so frustrated and angry with myself, because I know that when I do test my results do improve gradually. I just feel like I constantly get stuck in the vicious circle and never know how to break out.
Reading a good rant on a Tuesday gets me going, please don’t apologize for it @T1Jedi !
@Beth2566 there is something I learned along the way about what would make me think that ignoring diabetes is the first thing to go when the going gets rough: fear and denial. I used to hate the word denial it would make my blood boil. “I would never do that or feel that way” I thought. Anyway, decades later I realized fear and denial help keep us alive, come from a very old part of our brains, and can be reduced once you identify it.
at around 10 years after dx, many of us go through some kind of depression. For me, depression makes me feel overwhelmed, exhausted, like I am at the bottom of an endless pile with no hopes of ever digging myself out. at about 10 years, I realized this was a “life sentence” and that thought paralyzed me.
due to a somewhat unrelated personal disaster, I had to come fact-to-face with all of the things that frightened me. the process was brutal, but when I was able to actually see it, it was very freeing, almost like an awakening.
if you don’t mind advice: please take a look at your self esteem, the things that make you scared, and all of your feelings around having a chronic disease.
the things that work the best for me are, talking about it, participate in self-help especially with people who understand me, take all things one-day at a time, admit that I do the very best I can do for today, forgive myself for getting sick, and be my own best friend.
good luck! please don’t disappear, please check in once in a while, we actually know why diabetes is what it is!
I know I live in denial but it’s the hatred for diabetes I need to deal with, I just don’t know how. I frustrate myself so much with how I’m so lackadaisical towards keeping myself healthy because I know that when I stick to it my results do improve gradually.
I hear you.
I lived in that vicious circle (a flaming death spiral for me, actually) for a long time. A doctor accused me of having a death wish once, that was in 1987.
here are some concepts that helped me. If you agree that your feelings are a combination of how the world actually is, plus your reaction to it, then if you want to change your feelings, you have to change your reactions to how the world actually is. I had to think about that one for a long time.
when we have bad self-esteem, staying angry at yourself is essential. you can’t hate yourself unless you are doing that thing. once you do it you can say “see I really am a bad person” which keeps your self esteem damaged by reinforcing a bad image, and you paralyzed. I found for me, that hating myself was one of the biggest things that kept me from taking care of myself, and taking care of t1d. I did many years of work on self-esteem. you repair it by starting slow. find affirmations that work for you, meditate, pray (if that’s your thing), strive to just be absolutely honest with yourself. This is easier to do with a therapist or with a sponsor (not a boyfriend or relative)
stop framing diabetes as “for the rest of your life” because for me, it really meant it’ll be over faster if I was dead. I had to start thinking about today ONLY. I had to realize that my meter was not a JUDGEMENT, it’s just a number, it’s a piece of data that can help me make a decision and that’s all. It took me decades to look at a 325 and not be mad at myself. “Today I will test my blood sugar before each meal because I always take the best care of myself that I can.” It was the first thing I could say to myself regularly… and out loud. Yesterday is gone and you cant do anything about the past, tomorrow is too far away, all you got in the world right now is right now. if you happen to make a disaster out of today, you can start again. you can start again 50 times a day if you need to.
if all the diabetes bs like log books and writing down what you eat at mealtime and when you exercised (this always made me laugh because I never ever did any of it) then it is simply not working for you. strive for manageable NOT PERFECTION. there is no normal, there is no perfect, not in life anyway.
I am not smarter than you, I am not stronger than you, I didn’t even think of 1 of the things I mentioned above, I learned them ALL from other people who were suffering and found a way to be okay in their own heads. You are just looking for a little serenity, there’s a lot of ways to break that cycle and it worked for me.
did you know that just wanting to to something different, just saying you want to break the cycle means you’ve already taken the first step in breaking it? you’ve done it. you can continue. the brain is a tricky device though, it’ll tell you to stop talking about it and make you think it’s “not important” just before you hit something really important… everyone in therapy experiences that feeling, just saying.
if you want me to continue just say - I can talk about this pretty much forever. =)
Beth, I think I may know how you feel; I was in your “oh what the heck” attitude 50 years ago. Yeah, I practically never did a urine test - this was before blood testing was available, and in fact for a couple of years I didn’t even have testing equipment or supplies. Yeah, I let myself go and ended up in trouble. My main diabetes problem was “Diabetic Retinopathy” which at that time was guaranteed blindness within two years. Fortunately I met a wonderful couple of doctors who talked me into taking care of myself [I hadn’t seen a doctor in 4 years] if not for myself but for those cared about me. Yes, I was dating a wonderful young lady who happened to be associated with a doctor who did ob/gyn consulting at Joslin Diabetes Center or Clinic. OK, I was read the riot act and I started to get back into caring.
I won’t preach but will be here for you as a listener. First off, you are not a failure and you haven’t given up; correct, you wrote here because you know you want better. It is true that T1D is with you all day, every day of your life and that you know that everything can affect your control and give you lousy BG readings and questionable HB A1c. Look at you numbers, try to understand what they are saying and why they aren’t what you expected, but don’t let the numbers OR DIABETES rule your life; you should be in charge and not some foolish disease.
Give yourself time, relax if you can but stay in charge; set a REASONABLE goal for a minimum or moderate number of finger-sticks each day and take a few minutes figuring out what those numbers mean - and why. Don’t forget to award yourself when deserved or needed.
One of the doctors I mentioned above was an ophthalmologist who had and idea for controlling retinopathy and I became one of his guinea pigs; I was one of the first select few persons to have laser eye therapy in 1967 and I still see fairly well.
Dennis
I’ve never looked at it like that before thank you to all of you! I do want to change and improve because I got diagnosed with background retinopathy in january & for every other reason as well of course. I just feel so much pressure from it all & from the people around me. I’m the only one who’s got diabetes in my family and although they try to support they don’t understand how much I struggle with it, not even my mum because I’m so good at hiding it and coming up with excuses and the usual imaginary numbers. There was a girl who I was quite close to with T1 in the year above me at school but she left and it really hit me that I didn’t really have anyone around me who truly understood anymore, but being able to speak on here is changing that for me thank you again!
Beth, you said it right “family supports … but nobody understands”; I’ve heard that many times and I’ve had that experience although my wife of almost 50 years is beginning to know what I’m going through. Yes, even after 58 years T1D with “good control” for the past 30 I’m still encountering new obstacles and experience plenty of frustrations - some days I just want to throw in the towel and let nature take its course. I mope around for a while and then straighten myself out.
I too gave out those imaginary good numbers and lied to myself - yeah, I came to the realization that I was only hurting myself. Now I write all test results in a notebook, good or bad, and leave that on the kitchen table; I no longer hide anything and that has helped others including the endocrinologist understand what I encounter. Remember too that you are unique and the best course for you isn’t necessarily what the books say - an individual and not just a statistic.
Keep in touch and ask anything anytime and this community, or I will offer you support or suggestions - for years I kept my diabetes a secret, felt all alone and suffered.
Think positive,
Dennis 
It’s been 31 years of T1D for me, and here were my “aha” moments - I hope some of this earned wisdom is helpful:
- When I was young, I always took my shots so I thought that was good control, even though my A1C’s were in the 9’s and 10’s. I rarely tested because I figured it didn’t seem to help anyway. I finally read something that explained that high blood sugar is like having maple syrup pumping through your veins. For some reason, that visual really got to me and woke me up to start taking control of the situation. It took baby steps and a few years, but I finally got there.
- We call it “testing” our BG, but it’s not testing, it’s actually monitoring. Tests are something you can fail, which doesn’t feel very motivating. By checking where our BG is, we then have the opportunity to do something about it. If we can figure out why it happened or it’s just an anomaly, we can treat it and move on. If we see patterns, we can adjust our regimens and pumps to hopefully avoid it going forward. I heard someone say that monitoring your BG is like having a rattlesnake in your living room. As long as you keep an eye on it, you can adjust your position and you’ll be OK.
- Our bodies are broken. We are missing a really critical and life-sustaining feature in our bodies, and the best we can do is mimic that process somewhat. It’s far from perfect, so we need to give ourselves a break. I tell people it’s like living in a rickety, drafty old house that you have to keep at a constant temp of 65-68 degrees, but the thermostat is broken. All you have is an icebox, a fan, and a wood stove to keep the temperature stable, and storms and heatwaves hit several times a day. And if you miss that range, the house gets a little bit beat up each time. That usually wakes them up.
- We don’t control diabetes, it is in control no matter how we spin it. What we can do is manage it as best we can. And the fact is, that is easier for some people than others. We’ve all met people who eat the exact same foods every day at exactly the same time and exercise the exact same way for exactly the same duration, and do the exact same activities every night, or avoid activities and eating out because they are not part of their routine. That discipline and rigidity makes some people happy, and they are usually very compliant T1’s, so hats off to them. I don’t know about you, but that’s not living to me. So I eat some of the same stuff from day to day and similar activities, but some days I switch it up, and I have a very full and active life. I live a balanced life. If that means I will not live quite as long as the others, I’m OK with that. I’ve had a wonderful life so far and I have more in me. Every birthday is a true celebration!
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psssht, hey @Dennis do you remember “clinitest” reagent tablets for urine testing?
@Beth2566 I also lied about my blood sugar numbers. when I was lying about my “numbers”, I really didn’t have to stretch because clinitest could only tell you if your blood sugar was ridiculously high an hour or more ago. “good” was so vague I wasn’t eve sure if I was lying.
I have retinopathy too, not background, I have proliferative, “on-disk” retinopathy. By keeping everything in perspective, and managing diabetes (mind you I never said beating diabetes, winning diabetes, bargaining diabetes, or anything like it) it’s been in-check for 10 years but I did have 2 YAG laser treatments.
anyway for me it was important to give up struggling and make peace with diabetes. it was the struggle that made me too exhausted to take care of myself, and something had to give.
take care!
ohhhhh yeah Joe I remember Clinitest; bet I got more orange than you.
For those who don’t know Clinitest, it was as Joe states a test to detect sugar in urine that provided a SWAG of what one’s BG MAY HAVE BEEN a couple of hours previously. Five drops of urine and 10 drops of water were put in a test tube and a Clinitest tablet dropped in causing the solution to boil and change color of the solution to indicate sugar levels [0, +1, +2, +3, +4]. Clear or blue color meant no sugar spilling into urine [good] and orange was the +4 [not at all good]. Enough of the history because we now have some very sophisticated tools to guide our own doctoring; Clinitest, I believe, is still used in laboratories.
Angivan’s point #2 says much - in recent years I have tried to follow almost exactly as she advises. Use the tools we have to monitor what our bodies are doing and when [not if] we see something we don’t like make adjustments and move ahead. Yeah, I had to wake myself up and then move forward after realizing how lack of attention was depriving me of the joy of life. Longevity is very possible; I belong to a T1D blog group with currently with 233 members asking questions, discussing solutions, advising, encouraging each other. The only requirement for invitation to the group is that one must have lived with T1D for at least 50 years; medals have been awarded to a couple who have had T1D for over 80 years.
As was said “Every Birthday is a Celebration”; for me that is significant for it was on my 16th birthday that I was so sick with undiagnosed diabetes that I couldn’t get off the bed - then spent 2 weeks in hospital.
Here is all I feel about it Beth. You can try sometimes to do everything right and everything possible, but many times we just can’t control how our body responds to our actions. I know that stress elevates my BG more than anything. When I go to the doctor and get test results my blood sugar goes up by at least 60 points!
I hope things are working out better for you. I do use an insulin pump and it does help me control my blood glucose levels bettere I hope things are working out better for you. I do use an insulin pump and it does help me control my blood glucose levels better esp with the CGM.