Weary Long Hauler

Hello, first time posting in any forum, but felt it might be good for me to get some things off my chest. In short, T1D for 46 years now. Diagnosed at age of 9. I’m not really looking for ‘management’ help, or even positive platitudes. I guess I just need to vent. I really hope anyone that is 20 years or less with T1D not read any further …
Because I had hope then as well.

None of this is getting easier with age, and carrying on a battle for as long as I have - well I’m bone weary tired. I was hopeful the first 25 years or so, always asking my endo what new cure options are being studied, but now my endo visit is more akin to Red’s visit to the parole board hearing at the end of Shawshank Redemption - “Cure” is just a made-up word Sonny…So I continue to manage, and fantasize about just stopping it all. Ironically, I think the muscle memory of trying to stay on top of it may prevent me from unplugging. Kind of funny really. So I’ve been a good T1D prisoner - managing my BS and keeping A1C in good levels - it has been my overriding health concern my whole life. Now things are creeping in, I really think this long drawn out torture is in some ways more of a mind f*ck than just taking a major illness on with a more compressed cycle.

I used to say having T1D had a silver lining - it forces you to have healthier eating and blah blah blah. It really has been a major thorn in my side and a POS to deal with. And after dealing with it for 46 years it doesn’t feel like I ‘won’ anything - because it is clear T1D will win the war. However, I suppose you can see living this long was the reward.

So when I T1D term I used R insulin and then mixed with NPH in those bright orange monoject syringes, urine testing was the only available way to check anything. Now on a pump with a CGM, and I have lost all ability to detect going hypo- which is a game changing scary development I now have to worry about. Unfortunately I must work for a living, I’m the family provider, and the wildcard of stress was something I hoped I could start to lessen - but that is not in the cards for me. BTW … T1D is the most f*cked up hobby ever - all this money and only grief. I am lucky to be on employer’s insurance, but the supplies are still a huge financial burden. Anyhow, I’ll wrap up and say thanks for letting me vent to the blogsphere

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I hear you attT1D arthur. I hear you and feel the heaviness you are feeling. The down days are so down. But I am with you.

Author & Mckenna @attT1D @Kenna3, Welcome to each of you to the Breakthrough Community Forum!

This journey with autoimmune diabetes, whether it is called Type One or any of the handful of other names used during my seven decade struggle figuring out how to use this insulin to continue life is and will always be a challenge. Certainly the “tools” we now have make our lives more pleasant [recall that the “urine tasting trade” was still active well into the 20 century], and especially the new insulin formulations of insulin provide us with a brighter future but it is still required that we make living a personal goal.

For me, a positive outlook on life is key. I have conquered my diabetes and have told “it” to get behind me and spend my waking hours in comfort while assisting other people get more out of life.

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Hi @attT1D and welcome to the forum. I reached 60 years on insulin last year. Like @Dennis I find looking at the positives in life is key and I hope you’re able to find a way to do it.
Have you thought about finding a new doctor? Sometimes a fresh set of eyes can be helpful, especially (but not only) if your doctor is older and set in their ways. Hypoglycemia unawareness is not unusual after years with diabetes. We’re told to keep our numbers in a certain range “or else” but if that low number isn’t workable maybe raising it a few points would help.
I know you didn’t come for advice but I can’t help brainstorming so I hope you will forgive me if I’ve overstepped. If you haven’t read the book Think Like a Pancreas by Gary Scheiner I urge you to do so. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful. I read it for the first time two or three years ago and learned some new things - there might be some treasures for you as well. And think about reaching out to a counselor - many people find that helpful.
Again welcome, and I look forward to your contributions.

Thank you Kenna3. I actually came back to delete this post. You nailed it, a bad day. Your comment makes me think to leave it up.

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@attT1D I’ve read a couple of posts similar to yours, they make me feel frustrated at the times I’ve gone off whether its worth it all, and marvel at the progress we’ve both made somewhat possible. I’m a short-timer in comparison to you, @wadawabbit, and many others. I mis-dx’d about 10+ years back at 58 as T2, until the oral meds stopped working because I was actually T1 with a very long honeymoon period. In someways I’ve thought myself very lucky to have only dealt with T1 for about 3 years…hard for me to even think it’s been that long. In many other ways, I’m right there with you hating this disease, trying to win both the battles and the war, knowing the battles are possible, for me at 70 probably not the war…BUT, we (you and I and those old folks that have this disease) can help educate those younger folks also tagged with it, in the hope they will see some great treatment and possibly the end of the war…things like the Vertex trials VX264 and 880 (real hope), advances in CGMs (painfully slow, but marvels in comparison to what you’ve seen), pump advances (could corporations please work together a bit more), and the DIY community forcing both the CGM and pump community to work together with advances like AAPS, Loop, iAPS, Trio, and many more (a relative saving grace for me, within a year of T1 dx, I was on Loop, now experimenting with iAPS and Trio).

It doesn’t make it all that easier for us older folk, but I want to say thank you to folks like you, that have persevered and endured; you have paved the way for the likes of myself dx’d late in life and, whether you realize it or not, made many of the current prospects possible. Thank you for not giving up, thanks for continuing the fight, and thanks for making life for myself and others easier by enduring what you have lived thru thus making life for those that will see these trials come to fruition possible!

You may not see it, but you and people like you are my hero’s! I hope you stick around and continue the fight!

Arthur,
Thank you so much for this post. I also have been T1D for 46 years +, age 26 to my present age of 73. Everything you said so applies, I’m just burnt out. After reading your post I thought about a movie awhile ago, Heartbreak Ridge where Clint Eastwood was this aging vet. I young guy told him you’re 0 one and one. No wins, 1 tie (Korea) and 1 loss (Vietnam). HIs old crony buddy said “we may have lost the war, but we won a few battles.”
Arthur, we lost the war, Diabetes will get us. But along the way we won a few battles. Last week my wife and I went to see our new grandchild- first one, a boy. Yea- a battle won.
I like to golf with my buddies, every time it’s a battle won.
Like you, boy do I get down, don’t need any medical advice, the young docs seem to know less than I do.
Let’s win a few more battles before we hang it up.

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