I forget how hard

I forget how hard it can be when you are first dx’ed with T1. I think I’ve got my act together now, after 4 years. I’m also convinced my life is pretty different than most T1’s. I was 46 when dx’ed. The math says I will live over half my life without diabetes. I will never have to go through teen angst, courting a potential spouse, college life, job hunting, etc. I think, for the most part, I have it easy.

It’s certainly not so for all. I have a young friend who was recently diagnosed T1. We spoke for just a minute yesterday, and it was clear that his was a very rough day. Mostly school stuff, gym class, peers, that kind of stuff. We live in a small community, and support groups are not an option. Of course I pointed him to TuD, but that’s not the point of my putting these words down.

When you go through the mental turmoil, regardless if it’s after 4 months or 4 years, the world doesn’t know what it’s like. You are really alone. And all the support in the world sometimes can’t clear the chaos from your head, or the sadness from your heart. Not parents, not super-great CDE’s, not fellow T1’s. And I think I know why it’s such an oppressive force.

I have been talking with an old friend who has had severe back problems (to say the least). A cyst formed inside his spinal cord, necessitating high tech surgery. He has undergone the first of 2 surgeries. He has lost his livelihood as a pilot. He faces huge financial burden. His right arm will never function at full capacity. He faces months of physical therapy.

We’ve discussed the differences in our maladies. The one difference that always arises is this; his is finite to a large degree. Over time, admittedly it may be years, he will should a state of stable normality. As healed as he will ever be. The problem as solved as it can be, and it is not expected to ambush him again. We talk about this some. His spouse is a cancer survivor. Same thing with her. Their position is this - the malady is to be overcome, solved, and you put it in the past. She has accomplished this. He is in the throes of trying.

We don’t get this light at the end of the tunnel. We are denied. We are required to be ever vigilant. Every minute of every freakin’ day. It never goes away, it always sneaks in a sucker punch. We’re going to be doing this when we’re 50, 60 , 70 years old. The cure is not around the corner. Our disease is a ball and chain we’ll be shackled with forever. I suppose one can choose to drag it around and moan, or pick it up and become stronger as we march through life.

Back to my young friend - on some level I know what he’s going through. And I can be there to help in some small way. But I hope like hell he can reach down and pick up that ball and learn to run. You gotta’ have some damn strong fortitude to deal with our lot. So I’ll be his cheerleader, his coach when I can. But it just sucks sometimes.

It does really suck sometimes. Lots of people say, oh there’s always someone who has it worse, and of course, that is true, but hearing that never makes me feel better. They also say that it’s easier these days to have it than back when I was dx’d, back in 1967, and that’s true too, but it doesn’t really make me feel better.

What does make me feel better is very simple. I have a friend who does not have d, and we talk every evening. If I’ve had a bad day, she just says, “I’m sorry. I’m sorry you had to go through that. It’s not fair.” She “gets it” - a rarity for a non-d.

It also makes me feel not alone to come here to TuD, where I know 99.9% will understand, where I know someone will reach out to give me a ((hug)), where they won’t scold you for a high number, but say, “good thing you caught that high before it got worse”. It makes me feel better to help another person, too.

hit the nail on the head boss :o)

I second what Marie and Louisa said. It does help to have someone else in your life who gets it. And I believe we’re allowed those days of feeling how heavy this burden is…because we have to deal with it again tomorrow and need to be allowed times to “feel” that out.

I just have second Type 1. I have been managing my 9 yr old daughter’s Diabetes for over 7 yrs now. Some adult T1’s have told me that it’s more difficult managing someone else’s Diabetes since it’s not my body. I don’t know what it feels like to be low or high. I don’t agree though. You guys are true champions and you must be realize how special this makes you. You’re living with one of the most demanding chronic diseases and surviving. Be proud of that and use this to gain more and more strength… and then “pick up the ball and run” with your head up high. What other choice is there?