Im looking for people thriving with type 1 diabetes. I seem to have good weeks and bad weeks, i used to do better than i do now and i know that i can do better, in fact i know that i can do great. But im missing guidance, role models.
I'm constalty told that you can live a long healthy life with diabets, but im missing a mentor somebody who has the condition is thriving with it. From my perspective a complication free life is a myth, even if its possible i have a very hard time seeing what i need to do to get there, and if what im doing is enough. If you know of anybody thriving with type one diabetes, let me know, maybe they have a blog, a twitter account, or are members of this community. Even better if you feel its you i'd love to hear from you.
I think all of us who live with T1D have good weeks and bad weeks. Heck, I have good minutes and bad minutes when it comes to D-management. To me "thriving" isn't so much about not having complications or having a "perfect" A1C or having perfectly steady BGs throughout the day (which is virtually impossible when you're operating your pancreas on "manual mode"). I personally don't even see "thriving" as living a long life.
To me, "thriving with type one diabetes" is about not letting it stop you from doing the things you want. It's a frame of mind I guess, an acceptance that you'll have good days and bad days and that if complications do happen, they are the fault of the DIABETES and not you. Thriving is about accepting the fact that there's still not a lot we know about this condition and how to manage it. Thriving is understanding that it's more than just food and insulin that affect our BGs, but also stress, weather, hormones, etc. Thriving is about being able to laugh at the absurdities of this disease. Thriving is about allowing yourself to periodically get angry or bummed that you've been handed a lazy pancreas and knowing how to get out of that place. Thriving is about being thankful for all the things we have (pumps, CGMs, insulins, endos, etc) which didn't even exist for most people a mere lifetime ago.
Some folks feel that thriving means they don't let diabetes stand in the way of anything they do. I guess I'm more of a realist. While I try not to let it stand in my way, I am ok at accepting that sometimes it will get in the way. I get creative and figure out how to work around it, but I try not to get angry. EVERYONE has something they have to work around, whether it's a visible illness or disability or something else.
A lot of my own attitude towards diabetes changed when I started reading Kerri's blog SixUntilMe.com. I think she's a perfect example of what I mean by above (and she writes about it so well). Her blog posts have lifted my spirits many, many times!
I am doing ok. I prefer message boards to blogs though. The community here is pretty positive although there are lots of negative moments "on file" too. I try to beat every test but, if I don't get the result I'm looking for, I look at it as an opportunity to do better next time and use "good data from a bad result" to fuel some improvement. A lot of times it's slow and incremental but it can still be measured, what with all these tests...
Hi Jorgensen, I've had the disease for 29 years. Diagnosed at age 5, I'm 34 now. I have travelled the world, done marathons, triathlons, lived all over and held all kinds of different jobs. Of course you can live a great life with diabetes. But all of us long timers go through phases of good control and not so good control. There was a period of my life where I hardly had any control - then another phase was super tight obsessive control. you find a happy middle ground and keep your A1Cs in good shape. At the moment my A1C is 7 and today I've been pretty good. I take my diabetes one test at a time, one week at a time. As for the complication free life being a myth - well 29 years with no complications at all. I see and Endo every 6 months. So are you calling me a myth?? ;) Ask me anything you want. I'll tell you the truth and about what I did. If it helps great, but each of us are a snowflake - different, unique, but linked together by a common element.
I cannot agree more with your point of view, thriving is a frame of mind. And keeping a positive outlook on life is the single best thing one can in life, weather you have diabetes of not. I will definitely start reading sixuntilme.com.
This weekend i was out mountain biking and nearly fainted from a bad hypo but still had a great time, next time i know i need to take more glucose before taking that root :).
But I believe that thriving is also quantifiable. I know, i feel better and can do more when i have good blood sugars, and most of the time they are under my control. There is in fact a lot of things we dont know about treating diabetes. It has been shown that besides insuline, improvements in technology have little to no effect on A1C's. Proactive treatment and changing habits does. I know that there are people out there who are, thriving objectively and subjectively, and i want to find them and see if i can learn something from them.
Yep almost all of us Type 1's (or Type 2's Type 1.5 and all for that matter) have good and bad weeks (mine seem to go by days though) Just to thrive with the D means to me to keep going and not letting the fact u have d get to u. I have some problems after 37 years with Type 1 but I don;'t think burt 1 of them are related to diabetes and that's the gasteroparasis. The rest (the way I look at it anyway) is just a part of getting older.
Im tryying forums for the first time, And its seems to be going well :).
Measurement and self reflection and a positibe mind set seem to be key to doing well, the hard things is keep it all up i guess.
I've decided recently that i wont let myself slip as much as i have before. To ensure this im making my data public, Eventually i want pepople to come in and encounrame me, give me tips and maybe offer compassion when things are not going great. This is my data my data, the website works best on an iPhone. What i would love is to see more peoples data, i guess it would help me not feel so lonely at times. I believe that sharing among diabetics can be much more valuable than sharing among family friends or even ones diabetic team.
The most important points have already been covered for you, Ian. Great posts by MBP, Acid, Doris and Amy, for sure.
I picked up on your MTB issue, so let me speak to that. I ride often. A lot, really. MTB is my passion (look at my avatar, for cry pete). It irks my wife that I MTB solo most of the time, but I have been pretty lucky, and my skills just keep getting better and better (knock on wood). Also, I always ride with my Road ID on my wrist.
All that said, I went out just a week ago after having had food poisoning the week prior. I was pretty dehydrated, and let my sugars drop and was kind of out of it on the trail. Happens to all of us (well... maybe not all of us...). I had to ask some ride buddies I happened upon out on the trial for some sustenance (my bad -- my one bag of Shot Blox had only one left in it when I left the house, and besides, I was out too long, and I was also dehydrated --- badness all the way around). It was not a good day for me. Led to nearly a week of recovery -- not really D-related recovery, but general get-myself-back-in-form recovery.
I'm glad you weren't hurt by your lows on the trail. I now carry a CGM, and it helps immeasurably with trending. And to be clear, trending, as it turns out, is VERY important on rides.
Let me know if you have any MTB-specific questions.
I hope i can do a marathon one day. I've honestly hadn't ever thought about doing a marathon, before diabetes, but i too am very active. And im many ways im out to prove to myself and other that i can do anything despite my condition.
29 years is a life time :), i was diagnosed at 23, i would be trilled to reach 29 'diabetic years' without complications. What i mean by myth is that we hear about it but we rarely see it, face to face, kind of like those before/after diets programs. You always end up wondering how they are doing today, now that the cameras have been of for a while. I would love a place where people who want to be open about their condition and their data can share they 'life' with others.
I feel like im going thorough one now. How did you feel during those obsessive control phase, did you feel like you where in control of like you where always on the edge?
That's a good start! I'm off to work out (not as much as Amy!) and just taking a peek at it, it looks like 6 tests/ day? To me, that may not be enough?
I made up a chart:
1) wake up, test bg 2) before eating test BG
3) before driving to work test bg
4) 2 hours after eating test bg
5) lunch test BG
6) 2 hours post lunch test bg
7) drive home test BG
8) get home, run 3 miles...oh wait, don't forget to test your bg!
9) post-exercise maybe, maybe not, maybe eat dinner and, you guessed it, test BG
10) 2 hours post BG, test BG ****AGAIN****
12) stay up late? Maybe squeeze in another one, what if you have errands to run, what if you want to exercise more (when it's nicer out, I'll run 6-7 miles during the week, more on the weekends...a lot of times, I'll run a long run on Saturday and then a 20ish mile bike ride for fun, speed and recovery on Sunday...there's several extra strips in there...).
It cuts down on "surprises" a lot and helps me anticipate things. I have a CGM too, which is also useful but wants me to test about every 2 hours or so.
Not letting things get to you seems to be the common message, its very encouraging to hear! Next time i have a hard time i think i'll pull this page up and give it a read :)
Thanks for the tips! I think i see the pattern :). Being more consistent with my readings is very good advice. I will try it. If you like you'll be able to see if im actaully doing it or not. It puts some pressure on me, in a good way.
I dont have a CGM, i hope to get one soon. Does it help, and do you use it every day?
Have a gerat work out!
BTW. If you look at the options in the bottom you can display how many readings i take per day. It's anything from 6 to 15.
Thanks! I will do. The winter is now almost over here in Denmark, and i'll be out on the MTB much more often. Im getting a CGM but it cannot come soon enough. I think you comment will help in getting my doctor to give me that CGM sooner rather than later.
I have gone through many peaks and valleys, I find it helpful to frequent this message board as opposed to blogs because I can search for subjects that interest me at the time (somogyi effect anyone??). Anyways, a few years ago I confided to a doctor that I avoided testing when I knew my BG was out of range and would blindly correct highs or lows because I didn't want to "see" the number. His advice to me was to always test at least 6 times a day and if the number wasn't in target at least I had the knowledge and the power to do something about it. The way he said it to me was so compassionate and I try to still keep that mentality. Hopefully all these posts end up being inspiring.
Also, when it I was really depressed about diabetes a few weeks ago, I came across "The Book of Better" I think it was reviewed on here - really simple reading but it made me feel good, check it out.
Hi Ian. If you "Like" your discussion it will be right there for you on your Like page, easy to find and pull up any time. The Like button is right under your original post above. Good luck.
Hi Ian. Living with T1 can be difficult. One of the most difficult things for me is that I had very few people in my personal life that could really relate to my successes and failures. The sense of community and being able to discuss things with other T1s is the main reason I come back to TU! I find it amazingly beneficial.
Two things that greatly changed my outlook on “thriving” with diabetes are hearing stories T1s that have been thriving for 50+ years and becomming a father. These provide me with a great inspiration to take as great care of myself. I know it is possible and I have a reason to give it my all. Hope this helps.
