Perhaps one of the most inspired JDRF commercials from the 1980’s, showed some happy future day where diabetics around the world were taking all their diabetes supplies out to the curb as trash. (Note, this was before AIDS and the needle scares).
At that point I knew that even if I was cured, I would still wake up every morning for the rest of my life thinking that I have to check my bg and take my insulin.
It was also perhaps the first time I realized that the JDRF was seriously out of tune with my progressive docs goal of controlling bg aggressively rather than just waiting for a cure. To JDRF’s credit they did eventually catch on (but decades later).
Since none of us has ever experienced diabetes being cured, we can’t be certain of exactly what psychological side-effects a cure would have on us. If you have seen the film about the Wannsee Conference, there is a scene in it in which one Nazi warns another about the dangers of achieving what they want, since they will then lack the object of hatred that gave their lives meaning. It is possible that something analogous to that may happen when the whole structure and orientation to life provided by the challenge of diabetes is removed, and we all suddenly have to reconstruct our understanding of existence to some new form which lacks the simplifying focus of a constant struggle against a clear opponent. There may well be many unanticipated side-effects from that, not all of which are positive.
I no longer feel a compulsion to check my bg’s…because of now wearing a CGM. It is very liberating to not have to keep poking my finger. I’d poke the minute I’d wake up, and check at least 3 times by 8-9 AM to see how the morning bg’s are starting out. the rest of the day is pretty much a repeat of what I just described. Now instead of a compulsion to test, I’m actually aggravated when I need to calibrate. LOL!
I think everyone has their moments, even yes in the healthcare profession. I certainly don’t support this persons opinion and do think diabetes burnout is very real. So apparently is burnout of treating diabetes.
We could all continue to beat up on this topic but I’d rather spend my efforts educating folks & healthcare pros about our plight.
I’m not in support of any health care provider yelling. If anyone ever yelled at me, I’d never go back.
But in fairness, unless you have been seriously overweight and have lost that weight and kept it off, you can’t really comment on how easy or difficult such a task may be, either.
I have mixed feelings. On one hand, yeah, all this sucks. But on the other hand, attitude is a powerful thing. Constantly thinking about how hard my life is doesn’t do anything to help me, while thinking about how I can tackle it even thought it’s hard gives me strength (and is not a lie). This is the life I’ve been given. It sure as heck is better than not living at all, and I am grateful every day to be alive (I’ve had very close friends pass away unexpectedly in their 30s). So I try to do what I have to do, even though it’s so much extra work and so much effort, and I try to do it with a good attitude. Sometimes, on hard days, I come to forums like this one, or sometimes on occasion I cry out of frustration. But the next day I get up and go at it again. I can still do everything I want to do, I just may have to do it in a different way and with a lot more effort than most.
I can relate to your perspective. Diabetes made me get help with an eating disorder. I can imagine my eating habits being totally out of control without it.
I am very tired of being Type 1 for 72 years. Is that tiredness burnout? I think burnout sometimes leads to not taking proper care of our diabetes. I have read about people who stop using insulin, and just going day to day carefree. That is the extreme type of burnout, and cannot be maintained very long.
I started my diabetes care in 1945, when I was 6. My parents did what was then the proper caring. I got into the swing of things and followed that example. Just a daily routine, and a vital part of my life. To burnout and stop caring for my diabetes is suicide. I certainly don’t want to commit suicide. I love my life with diabetes. It has been a wonderful life for 72 years, but only because I did not burnout. Never will I burnout!! I am working my way to the 75 year medal, and then I will pursue a 100 year medal. If I do complete 100 years with T1D, they will create a 100 year medal, won’t they???
For the life of me, I don’t understand the fascination, desire, or what-not to receive a medal because one has a life-long disease such as diabetes. I can’t wrap my head around it! I don’t want a medal–I want a cure.
@Dave44, I was not especially interested in the Joslin medals until I read about the Medalist Study. I really wanted to participate in that study. There have been 1000 medalists who have participated in the study at the Joslin Diabetes Center in Boston. All participants have the 50 year medal. I have participated twice. Many very interesting things have come from the study.
There is also a medalist meeting in Boston in odd numbered years. It is so nice to be able to sit and talk with fellow medalists at those meetings.
There is a special group on Facebook for “The Joslin Medalists”. Only medalists can join that group. Many interesting discussions there.
Theses are the reasons I wanted the 50 year Joslin medal.
IMO, Richard deserves a medal! It’s nothing to do with a physical medal, but more like a congratulatory pat on the back for a job well done. I am 53 years T1 and grew up in an age where people thought Diabetic women couldn’t have healthy babies and live past 50. Happily proved them wrong on both accounts.
T1’s know, only too well, of the struggles, inconsistencies and the determination required to effectively deal and live with this disease 24/7.
I can identify with Richard in that I love life as well and don’t have any semblance of a persecution complex for supposed injustices life may have flung at me. And Richard, if you’re reading this, I’d like you to know that I, too, started my D journey with my mom boiling a glass syringe on the kitchen stove. Only made me love and appreciate life more!
I’ve been eligible for a 50-year medal for the last two years but I don’t want one. In part this is because surviving that long is in large part due to genetic luck, since a large proportion of that group have an inherited resistance to developing complications, due to protective mechanisms preserving their DNA, and no one should get a medal for what they were born with. I believe even those without that genetic luck have survived 50 years or more to a great extent because of luck, since living that long with diabetes depends to some degree on people discovering you in time when you have been unconscious from hypoglycemia. A further source of genetic luck is happening to come from a long-lived gene pool, since then the 11-year reduction in life expectancy caused by type 1 diabetes subtracts from a higher starting value.
I certainly don’t believe that long survival with type 1 diabetes has much to do with how assiduously people control their blood sugar levels. Many studies now show that genetics plays a major role in the development of complications, as well as the damage caused by the continuation of the autoimmune attack on the body that began with the assault on the pancreatic beta cells. Diabetic kidney failure is the major determinant of life expectancy among diabetics, and this is known to be very heavily dependent on genetic factors. I know one type 1 patient who is still in his thirties but already totally blind and on dialysis, and his blood sugar control was better than mine, so I don’t feel I deserve a medal for anything I did.
I have been fortunate in that my primary doctor does not blame and has never made me feel badly about myself. In fact, it is a bit of the opposite, with her having set guidelines that are actually too loose for A1C’s. I reached burnout after the first five years, and slowly but surely went back to eating anything I pleased and numbers be damned. That was true until this year when I was the one to notice my increasing numbers in urinary serum albumin tests, which had just passed normal values. The fact that I was the one who, only after the fact, looked back on the previous years and realized the trend makes me a little angry. No one in the medical profession had told me anything about it. This year I am back on track, making sure my A1C is at a good number, taking my BP med and have driven down the urine albumin number a bit already. It does feel as though everything I have learned I have learned on my own with the exception of the first three classes I had taken back at diagnosis at Joslin, which were enormously helpful. That was 15 years ago though, and in the years following those classes I have been grateful for the internet and the wealth of “real” knowledge available to us.
Luck swings both ways, sometimes good, sometimes bad. As humans we definitely notice and mark a turn of bad luck. We often grieve as a way to cope with anger, sadness, and disappointment when fate injures us.
Life owes us nothing and believers in ultimate fairness grumble as life surely disabuses us of that notion. Given that, I still think it’s healthy to celebrate our good luck when it occurs. Most of us know we didn’t earn it but since we must also deal with the bitter bad, I think we deserve and it’s healthy to celebrate the good!
Lol, I agree entirely. I’m going to share one of the more ridiculous ways I deal with my own dark feelings, that many people think is insane (but works for me). I listen to music on a regular basis, partly because music produces such strong emotions for me. I have never been one of those folks that can listen to music “in the background.”
So, when I’m feeling dark, sad, or let’s face it, depressed, I don’t listen to happy music. Ever. I listen to the darkest and saddest music I can possibly find. For me, that is often certain “classical” (although actually Romantic, in my case) compositions (largely Beethoven and Chopin), really depressing “anti-folk,” and a horrible genre called “doom metal.”
Why? Because listening to really sad and dark music lets me somehow feel all those feelings very intensely, and then put them aside so I can concentrate on being a good Dad, a good husband, and a good employee. I get to indulge that “depression” and burnout a bit, and somehow I can let it all out in the music and then move on to acting as if I’m actually OK. And somewhere in there, I actually get OK. But I don’t get there by pretending to be happy or only listening to Bobby McFerrin or John Philip Sousa marches.
People have to figure out there own way to be “OK,” with whatever is going on in life. For me, I listen to dark and sad (and occasionally angry) music, and it works to reprogram my brain so I can focus on the important things. But it’s never been important to me to pretend that I’m happy when I’m not. Being unhappy doesn’t have to be a burden on myself or others.
The fascination for many of us long timers is we were told we’d never make it that long. No one thought they would live that long. So when as a younger person I first learned of this wonderful group of people who were living well with their diabetes and living longer than I had hoped I could, i was in awe. No one back than really thought people with diabetes would live that long.
I am so happy and thrilled that with all the advancements in our treatment plans, we are now leaving well and much longer than the general public. I don’t see myself slowdown anytime soon!
Along with Dave 44 I have discovered CGM. After 40 years of blundering around in the dark uncomprhending why one day my BG is soaring and the next bumping along the bottom and trying to work out a pattern in all this. I have now entered out into the brilliant sunlight watching my BG respond and sometime not respond to my injections and carbs and generally giving it a good kicking to get it back in line.
I now know that all those plans I was given inject this eat that at this time is generally rendered nonsence given the reactions of my body. Now just looking at the readings on my smartwatch and the trend arrows I am now in control with alarms to tell me when high or low. HbA1c now 6 and hopefull down to 5. something in 3 months time. BG is now a computer game.
This tech is life transforming. I cannot understand why most type 1’s and almost all clinicians have no knowledge of it.
I have set up a very simple website bgonmywatch.com which gives you the basic ways you can get out of the negativity talked about above - in the language of the moment take back control.
I give you all the ways I know to get CGM together with basic costings. Stop struggling and join me in the sunlight.
