23 years on and still not coping!

Hi all, I’m a newbie on here but have been reading the different posts amd am loving the fact that all of my issues seem fairly normal!!! Yay, well sort of. I’m now 34 yrs old and have had t1d for 23 yrs. I have never had good control and have always had a bad attitude towards this disease and have fought it in my own stupid way by doing what i want and believing that i would not let it control me. I work fulltime as a teacher, have 3 most of the time lovely children and we also dairy farm. Life now is so hectic that i still dont look after myself, and due to being busy will always run high to avoid lows. Absolutely hate them!! Next worst thing is that i have smoked for the past 15 yrs and after reading many of your posts have had a massive boast in giving up again for the 4th time, fingers crossed. Anyway i thought i would try this forum to help maintain the motivation that i am seriously in need of to start working towards myself trying to truly get some control back over my life!!! Look forward to reading more inspirational posts

Hi Laura -
I’ve had T1D for 31 years, now 48 years old. My control was terrible during the first several years, but I told myself I was OK because I always took my shots and only went into DKA once after diagnosis, and never needed Glucagon. But my BG’s were a total rollercoaster and I hated checking my BG. About 8 years in, I read something that said having high BG is like syrup running through your veins. For some reason, that visual really clicked with me and I started taking baby steps over the next few years to improve my diabetes management. I don’t like the word “control”, because let’s face it, my body is in control no matter what I do. But I CAN manage it, and you can too. My A1C’s in the old days were as high as 13 and regularly in the 8’s and 9’s, but for the last 15 years or so they’ve mostly been in the 6’s or 7-ish. I still have bad BG’s sometimes and unexplainable rollercoaster numbers, but for the most part my numbers are good. I know no one likes to hear the horror stories, but this year has been rough for me with some beginning kidney issues and neuropathy, and that has motivated me more than ever, but it is depressing too. Bottom line is, managing your BG’s better will make you feel better so you can do the things you enjoy. I set reminders for myself on my phone and work computer to check my BG because I know how hectic things can get. Stay in touch so you can share how things are going!

Hi Laura
I too just quit the smoking thing after too many decades of smoking. It’s been since Christmas, and I do feel much better. Been dealing with insulin since 1966, and like others, have not let this thing slow me down. Living life to the fullest at Grateful Dead concerts, working in the ski resort business for 32+ years, and all the fun, and drama that comes with resort life. Good control, bad control, and back to good control is a cycle I have worked for numerous decades, and I have only suffered some mild complications. At least what I am accepting as mild. “I will place on a censor tomorrow” I find myself saying this, until I eventually force myself, then things get better. I try my best, to do my best. The Big D is not going away, so al;l I can do is accept it.Try your best, then do your best. No such thing as perfection.

How big is the dairy farm? Approximately where is it? (Which state if in the US).

-iJohn

small changes. manageable changes. progress and not perfection. once you realize you are fighting you then you’ll get an idea of why it’s so hard to win.

ooooof, yes: smoking. you just have to stop. this isn’t cutting back, this isn’t switching to “lights”, patches, electronics, or gum… it’s stopping. been there, and it was bad. I have war stories a-plenty if you want to hear them.

good luck and let us know what you are struggling with

Hi all, thanks heaps for commenting. Im on my second day without a ciggy and feeling extremely manic, im fine with that though. The house is spotless hehe. Ive decided to try and keep everything as simple as I can. I am on patches and not really sure if this is good but it is making it easier. Ive decided to test more regularly but not setting specific times etc just trying to manage what it is at that time. One of the biggest things im worried about is eating in replace of ciggees so hopefully lots of water and tea will help. Joe :slight_smile: I remember about 10 yrs ago, i walked into an old medical facility to get my annual eye test. This lovely 40-50ish old man just looked at me and shook his head and said u poor young girl having this horrible disease! He then pointed to both stumps and said to me “this is what smoking did to me”. Being so young and still not dealing with reality i just smiled and shook it off. Far out that moment is sooo in my head at the moment, massive motivation!!! Thanks again for replying i am really enjoying reading and learning from everyone​:slight_smile:

fear is okay as a motivator…but short lived for me. not sustainable because I can get used to any level of stress (fear, anger. etc.) my brother is a doctor and we talk all the time about human psyche: it is amazing what the body can get used to. anyway, the only sustainable motivator for me is the desire to take care of myself because “I am a worthwhile person, I deserve to be happy and to take care of my health”. It took over a year of saying that in a mirror (I am not kidding… strange? maybe. but just try to do it one day, out loud, in front of a mirror without laughing or looking away) before I started to believe it. It took longer than that to start to see that I really hated myself, and that all my self destructive behaviors (and I had a lot of them) came from that misdirected anger.

the chemical dependence of smoking takes 30 days of zero nicotine to get over, the psychological dependence takes a lifetime. I even had to get rid of a car - the one I used to smoke in… traded for a 5-speed pickup truck that kept both hands busy… as for the rest of the years… for me it’s one day at a time.

you already want to - which to me is a great start. don’t think of it as “for the rest of my life” just think about it as “for today”. setbacks are not failures, setbacks are setbacks and you can start over anytime and as many times as you need to. here’s an Irish wish for your journey (no offense intended, it just means more power to you): nár lagaí Dia do lámh

What I have to say may not be of much value because I have only lived with T1D for 12 years (that is more than half of my life, but you’ve lived with T1D for about as long as I have been alive).

I finally made the decision to start taking responsibility for my health once T1D started to erode my academic performance and ambitions. There is time I won’t get back and mentoring relationships that may never be mended (mainly because I didn’t know how to ask for help). However, I do think that my future will be bright if I make a serious effort to be responsible for my health from here on out.

Technology has been the most crucial factor for my gaining control. When I started to see my current endocrinologist in Q4,2014 my HA1C was ~15. Last week it was a 6.3. I rely on my Omnipod, CGM, and vigilant finger testing to know the state of my body at all times. Not incidentally, I would not have been able to have access to those technologies without great insurance (I was uninsured throughout college).

Finally, and this gets its own paragraph because it has been a deep struggle for me, I had to let go of being afraid of gaining weight as I gained control of my blood glucose. Part of what helped me is realizing that I am worth caring for despite my weight and that I can strive to be a healthy and lean person instead of skinny and starved. This has also meant accepting that weight control will be my new struggle but it is winnable.

I hope this helps. Best of luck to you.

jt

Smoking stopped on Christmas Day, did the patch, and it helped. Still smoke free. You can do this!!