As a fan of comic books and spy thriller novels, I must admit at times I feel as if I have a “secret identity,” or I have another life. My secret identity: I can go from an independent, self-sufficient individual to a solely and thoroughly dependent individual. Dependent upon my wife, family, co-workers, even strangers depending upon the time and place of my transformation. In seconds, I can become an unconscious blob, a semi-conscious, but irrational, human, or a semi-autonomous, functioning, but unaware, human. Usually, those are in sequential order, progressing or devolving from the semi-autonomous condition to the unconscious, blob-condition, within minutes or less. I do not usually choose the time or the place, intentionally. Rather, my decisions hours, sometimes as many as 24, earlier can affect my condition. While my mood is appreciative to those helping me, it isn’t always to those who are closest http://sixuntilme.com/wp/2014/12/26/smash-low-bloodsugar/ . I don’t mean to do it, but you do something 24/, 365 days a year, no holidays off, no days off, no summers off, etc., mistakes will happen. And these mistakes can be deadly. I know that and really try to avoid them. But it pays to be careful. We face questions and judgments if we reveal our true identities, and possibly deadly consequences if we don’t. But, I know my secret identity can reveal itself without my influence or choice.
We are often told what thoughts and feelings our parents with children who are diabetics think and feel, but I wonder what the children of diabetic parents think, or thought as they grew up?
A complete role reversal where the children often feel like they are responsible for the parents, or a loss of the feelings of safety and security that a parent often provides? As much as we would like to hope it never happens, the frequent news stories of children “saving” diabetic parents is probably only the tip of a very embarrassing iceberg, from which diabetics may try to shield their children.
Maybe it would help to hear from children, especially grown-up children of diabetics. Did they see their parents as heroes, who courageously battled disease daily, if not hourly, to raise their children as normally as possible? Or did they view their parents as an undeserved burden in their young lives? Is or was there anything their parents may have done to ease the burden?
I’ve not been blogging, because of life. So, I know it’s a lame excuse, but with a two-year old son, nearly two-year old, an undiagnosed nerve condition, and a diagnosed chronic disease, I do what I have to do.
My nerve condition has been described as Ataxia, but whether it’s MSA, Parkinson’s, or a one-time occurrence, it’s a problem. It involves loss of balance, poor handwriting, and slurred speech. I will fight it, as I have fought Type 1 Diabetes for over twenty years, but I would be lying if I said it’s not serious. I have thought about more specialists, a specialized clinic, etc., etc. I have had to consider Disability, work-at-home occupations, and long-term unknown developments. I have been bitter, angry at God, even more grateful and greedy for life, and not wanting to waste a second of what I have.
No doubt T1D is tough and challenging, but compared to Ataxia, it is a simple solvable problem. So what do you do when a health issue is not so simple and solvable? Advice?
An interesting article that reflects on culture and society.
John Wayne, a man’s man, had one lung after 1964, and carried an oxygen tank with him on sets. President Kennedy struggled with and covered up his Addison’s disease.
Now in 2014, although we’ve changed in many ways, in many we haven’t as a culture.
I’m curious as to why we haven’t. People are more open about everything than ever, yet why haven’t we seemed to change on this? And as those with the diseases, how much do our own fears, attitudes, etc influence culture.
It struck me when seeing Robin Williams ( and I realize this may sound like Monday morning psycho-analyzing) when he quit laughing, how profoundly sad he looked
Why is type 1 diabetes so incredibly self manageable, while at the same time so incredibly frustrating? Could it be the whole thing seems something out of a comic book? Let’s look at it. Your arch nemesis or super villain curses you with a disease that either must be treated almost hourly or with a combination of drugs that must not only be carefully mixed, but carefully scheduled when dosing. If you take too much, or increase the supposedly good habits in life, (like daily activities, exercise, etc,) short-term consequences can be coma or death, much more immediate than the long-term consequences of the disease itself. Yes, this belongs in a comic book, right along with Kryptonite, a red sun, or you get the idea. However, it is our lives. So we make heroic efforts not to be burdensome on others, but to be productive citizens and responsible family members, all the while trying to act “normal” and hide, if not the disease, its more onerous symptoms and complications. And being obsessive about treatment, like a Batman is about seeking justice, even the most mundane of tasks can end up being dangerous. Our arch enemy lives inside of us. It may not define us, but it is always fighting to control us and to own us, not every day, every hour of every day of every week of every month of every year. This fellow diabetic recognizes and applauds your efforts.
A thought hoarder, that is. Information is, and has been, my obsession. Whoever said what you don’t know can’t hurt you, was wrong. Most of us live, are at least guided by, sometimes dictated by, information.
We consume it because we need it. Ask any parent, or diabetic.
“New” parenting advice, information on what’s the newest threat to children? Let us have it, regardless of the brain space it takes up ( and those who know me, know mine is limited), or the amount of time it takes to consume and process, or the emotional price it often carries. Like information for diabetics, guilt and worry are often the costs ( Two or more for the Price of One!)
How much of it though is needed, and necessary to be a good parent, or a diabetic with well-managed blood glucose?
How many think we need to de-clutterize and quit making the unimportant seem important, and quit taking for granted what’s really important?
On this July 4, I can only repeat part of this great American’s speech:
So I close in saying that I may have had a tough break, but I have an awful lot to live for.
Lou Gehrig July 4 1939
The dad part comes first. Has since my son was born and always will. Even when I’m checking my BG before holding and comforting my crying son, I’m doing it in the best interests of my son, and I think most diabetic parents are like me. When it seems like we may be looking out for ourselves, we’re more than likely looking out for our children and loved ones.
Sometimes it’s not easy to look out for ourselves first, diabetic-wise. We have obligations, responsibilities that can compel us to ignore a hypo sign, push it a little further, skip a snack. We do so at a high risk and dangerous outcomes.
And in order to ensure we’re taking care of our obligations and responsibilities, we first need to take care of ourselves, without guilt or fear or stress. It’s a paradox of sorts, but it’s what we face, day-in and day-out.
And if those around you don’t understand, explain it to them. Ironically enough, in these days of openness, privacy, especially about medical issues, keeps a lot of people from asking and learning about you and about me. And that’s what’s most important. Not the latest in treatments or trends or predictions or forecasts, but my life with diabetes and your life with diabetes.
But today, although I checked my BG the normal number of times, bolussed and basaled the same ways and ate along my normal carb guidelines, I especially felt like the dad who is a Type 1 diabetic dad and the dad of a fine, special boy. I feel that way everyday.
Happy Father’s Day to all the diabetic dads.
Sometimes I feel that we as diabetics, especially type 1 diabetics, may come across as a little ungrateful for all the advances made in the struggle against diabetes. One hundred years ago, I wouldn’t be alive. Chances are, if you’re a type 1 diabetic , you wouldn’t be either. I’m grateful for all the advancements, all the technologies, as annoying as they can be sometimes, that give me another day with my loved ones. Even in the last thirty years, I am grateful for technologies like the infusion pumps that have led to better treatment, better outcomes, and better lives. I don’t think there aren’t many type 1 diabetics or families affected by diabetes, who aren’t grateful. Granted, there are parents of type 1 diabetic children, who rightfully wish they could do away with this insidious disease. But the advancements have been phenomenal. I wonder if there is another disease that has shown so much improvement in the ways of treatment and outcomes? I doubt it. Sure, we see a lot of things we think could be improved upon. Nothing is perfect. But we’ve come a long way. I find myself grateful to all the medical researchers toiling away in labs, the medical professionals seeking new ways to help us, and the clinical trial patients who have volunteered to help make our lives and future lives better. I often feel we don’t thank those people enough, or at least I don’t. Thank you.
Exercise is usually good. It can boost our strength, our self-confidence, and, as a result, our spirits.
For the T1D, it’s not immediately rewarded, but it can be immediately punished. For the race, the mile, or the set of reps, we can feel normal and back in control.
But our bodies are anomalies. Exercise is often punished. I found this out shortly after being diagnosed with T1D and working out as I had before. Big mistake that resulted in a trip to the Emergency Room. I had to realize what my body wanted to do and adapt, and what my artificial insulin wanted to do. And adapt. Insulin is a high-alert medicine. Not the only one, but a big one. High-alert medications are drugs that bear a heightened risk of causing significant patient harm when they are used in error. Although mistakes may or may not be more common with these drugs, the consequences of an error are clearly more devastating to patients. The crazy thing is that usually inactivity is more immediately rewarded than activity.
Nevertheless, many of us play it, run it, and risk it, because we know it makes us feel better.
And that may be more than half the battle. Alot more.
Just check, check, and check, and then risk it.