I’ve often told people that Type 1 diabetes saved my life. I was diagnosed at age 12 and have since been very careful about my diet and many other things. This disease kept me away from recreational drugs, etc. I’ve been type 1 for over 50 years and have yet to experience any serious side effects. It’s not perfect but it’s a way of life.
I’m sorry to read this, @meee. I realize that not every case of long-term diabetes responds well to personal effort. I hope that your ability to interact here brings you some comfort.
This seems like a heavy burden to bear. Is there anyone you can talk to about this face-to-face?
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Congrats on finding a good balance between diabetes and the rest of your life.
@bparsons54 – Although we’d all trade away diabetes in a heartbeat, I agree with you that its presence in my life has given me some benefits. Your 50 years of diabetes without any serious side effects is no small thing. Keep up the good work!
This post got me thinking about a post I made some two years ago about everything I did to get an A1c in the low 6s. I’ve been thinking about that post for a few days, and finally spent fifteen minutes searching the site trying to find it. I’ve recently felt as if things have come together again so that my next A1c will likely be in the low 6s, and I was curious if I was doing the same sorts of things as I’d posted two years ago. It turns out that I am. I’m not doing all of these in exactly the same way—I’m eating a mostly low-carb diet at the moment, am not having to pre-bolus with Fiasp except for higher-carb foods, and by using Flonase on my skin with infusion sets they have started to (barely) last two days. I’ve also added in exercise, because that’s something I’m doing and I know I was doing back then, I just didn’t mention it for some reason.
- Using an insulin pump and taking advantage of its advanced features and settings
- Getting a Dexcom CGM, though I do have to pay out-of-pocket (this more than anything)
- Limiting the carbohydrates and GI of foods I ate (not low-carb, though)
- Being very precise about counting carbs (using a scale and carb factors)
- Avoiding foods that I knew just made me high no matter what I did (like cereal)
- Looking back at my blood sugar daily and making adjustments to my pump settings
- Pre-bolusing by a significant amount before meals (sometimes up to an hour before)
- Correcting highs and lows before they happend (à la Sugar Surfing)
- Not being afraid of running in the 4s for hours on end (thanks to the Dexcom)
- Changing my Dexcom alerts based on where my blood sugar was and what I was doing
- Confirming my Dexcom readings with finger sticks before making treatment decisions
- Changing my infusion set daily or more (I have allergy issues with infusion sets)
- Responding pre-emptively to things that have a large impact on my blood sugar
- Exercising daily (walking to work, going to gym several times a week, home exercises)
This sums up how much work has to be put into diabetes and haw many things have to come together for tight control. Wow. No wonder it’s so hard to keep up the pressure (this is how I feel, I can’t just get into a routine and relax with diabetes, there is always a pressure to be on the offensive).
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That’s a good idea, comparing today’s success to past success. Honest personal refection can really pay-off when dealing with diabetes. It’s kind of like New Year’s resolution thinking but not limited to once a year.
I know you’re reading or maybe even finished Adam Brown’s Bright Spots & Landmines. I haven’t finished yet but one of his suggestions really hit home for me. Adam doesn’t eat anything after dinner except to treat a low. This is nothing new to me and I’ve practiced it from time to time but I never made the habit stick long-term. I know its value but his testimony drove it home how simple some big changes to my diabetes routine can be. I adopted it (again!) starting last week and the results have already been amazing in terms of better overnight BGs and better overall control.
I’m happy to read you’re getting the results you want.
I think one of the big things still have to figure out is how to not fall off track when life is not going perfectly. I’ve done amazingly well this past week, but this past week has been a good week. What’s always knocked me off track in the past (sometimes for a month or two to over a year) have been challenges such as travelling, stress, or health issues (basically any time I have lack of time, energy, and familiarity/routine). Trying to figure out strategies for staying on track when those things hit would help me the most in terms of maintaining tight control for the long term. Soon I’ll be taking a week-long trip for work, which will be my first challenge in maintaining my habits while things are a bit busier and more out of my control than currently. Then it’ll be summer with intensive classes, with little time and lots of walking involved in classes (classes like this last summer knocked me off track). Then in the fall it will be a three-month practicum where I’ll have no time, a ton of walking, probably have more stress than usual, and likely be living in a dormitory of some sort. If I can maintain my control through those things, that would go a long way toward making this a permanent haibit for me.
Hello terry4,
Once it’s guaranteed, 100% cause and effect, sure I’ll make “greater efforts”. I totally reject (with earnest regret) what I think is the basic premise?
Far more emotional expense goes into worrying, being terrified by too many of us.
I can make no mistake and yet still fail, correct? I do not accept the current basic approach is a great one. I propose far far less invasive is mandatory (fundamental) to anything which will matter in future.
Like Polansky, Nash, Lebow, etc. in that if we have honed psychology tools, behavioral tools which are taught and engrained will be far better always than gigabytes of data.
IMHO, “control” is mistaken approach.
Respectfully…
I get your point but I don’t think using behavioral tools and analyzing data are mutually exclusive goals. Living with diabetes, first and foremost, is all about balance. I don’t think we can usually pursue one set of goals with total disregard for another set without some personal cost. I still respect the “your diabetes may vary” mantra.
Thank-you for your comment, @Stuart.
Terry,
I have been reading your post almost everyday and it really makes such great points but it is such a complicated subject.
Do I give diabetes it due? Darn right I do. I don’t have a choice. I must. And his is where I get into the “should, must, have to” situation. All the things someone with diabetes should do is huge. The should list is overwhelming sometimes.
That being said do I give it it’s due, yes but I don’t have a smile on my face while I do all the “shoulds”. I was part of that beginning that was told I would be blind in 5 years, have no legs or kidneys, never have children and never make it past 30. So fear of all that bad stuff helped keep me focused on e “shoulds”.
I work full time, have a family and home, friends and responsibilities that must be attended to. So does the diabetes get pushed back, sometimes but it’s always there and I give it all the respect it deserves but I probably don’t give it the time I could if I wasn’t working full time. But am I doing well, sure am. Are my numbers as tight as some would want, probably not but so they work for me, yeah. I have learned that what works for one, will probably it work for another. So my goals make be happy and I can live with them.
I also think about the time I spend on my diabetes and I’m sure the numbers would be crazy large, but at this point, I don’t really think about. It’s all automatic. Testing, just do it, correction, just do it, exercise, just do it. I really don’t think about it, it just is. It’s part of my daily life.
So do I give diabetes it’s due. Yeah, but at this point in my life I don’t really think about it. Just another should do and must do. Now I’m thinking I don’t think I want to actually calculate how much time I spend doing and thinking diabetes. It could be a pretty darn big number. Scary what I could do with all that time, if I didn’t have diabetes.
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Hello Sally:
I’m not as certain we MUST give our dragon its “due”. There are many who pretend they are not, or outright ignore it at their peril.
Seems by in large more common with our teens, twenty something peers, but there are some who the fear/terror has overwhelmed them, or worse taught them despair,
What do we do with them I wonder?
Hello Terry4:
Reading the thread, I realized I didn’t actually answer your question directly (IMHO).
We must respect our diabetes, if we ever ignore it, or pretend we do not have it, especially long term, it has ancient reeking teeth, and fire to try and destroy us, at every possible level. Dismiss it blithely, it will try and kill us given the right opportunity(ies).
One other point I believe I hope is a meaningful one.
Ever attended the stereotypical “Diabetes Education Classes”? Uggggh. They are always aimed at “beginners”, understandably but still. You or I, would give the dietitians apple speeches, the death dismemberment gangrene speeches, far better than most presenter’s.
My point however the cardboard cutout routine, the rah-rah diabetic cheerleading which passes for “education” is a low bar indeed.
I’ve seen some pull it off, but too few. How do we separate artificial brighter attitude (totally artificial) from something genuine? I would appreciate a better attitude, yet have been taught skepticism by experience. Love to remove it… but see no awesome outcomes diabetes wise. How do we get from A to B knowing the potential venom the disease can possess in the right circumstances…? How do we get there???
@Stuart, Have you tried Dr. Paul Lam’s Tai Chi for diabetes. He says if you do it for 10 minutes daily it will improve your diabetes. It would certainly calm your mind during the black days, help the dragon teeth and venom back off a little.
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Wistful tired smirk…
Had an actual appointment with the man, he was looking forward to chatting with me in person try and figure out an answer or two together hopefully.
At his kinda local seminar, with his senior most regional instructor… then I got severely injured the day before the seminar started.
I’m thinking learning the Kuan tou/Guan Dao (Reclining Moon Blade… huge thing on the end of a 6 or 8 foot staff…) would be mandatory to do this specific work required. Like the concept though… do indeed.
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Not sure who I can talk to really since no one gets it and everyone has such a different experience with this disease. I have gone to various groups etc which were awful and never made one friend there even though some were type 1’s diagnosed later in life also. This is a very isolating disease which most people don’t have a clue about. But yes it is nice to be able to come here with questions etc. Until the fear and stress of this disease is removed from me my life will never be the same. Each day is a struggle.
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Hey meee, you’re not alone. I feel much the same and have had much the same experience. I have complications and am legally blind. This means I cannot drive. I do not live in an area where I can walk to anything. This is the worst part of all of it. The isolation.
I had hoped that online connections would be sufficient to cover most of that. It helps, somewhat. So if you or anyone else is interested in becoming more connected on a conversational level, I am here.
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