One of my fellow bloggers had this line in a recent blog: We can’t do this alone, but we are alone. http://theperfectd.com/2015/02/17/diabetes-diagnosis-increases-psychiatric-disorder-risk/ How true. Our culture orbits around food (remember Superbowl pre-game ads?), and how parties around food are much relied upon for good times involving fellowship with friends and/or family. We deny ourselves food, what others enjoy, ceaselessly, in abundance, seemingly without end, while we discipline ourselves. Sound familiar? We can eat, but we often must take guesses as to what we are consuming, often inaccurate, sometimes dangerously so. So mostly, I and others, just avoid the nice, appealing delicacies. We don’t mean to be rude or ungrateful, although it may come across that way. We are just better off if we don’t partake. It’s not usually our waistlines, so much is it our fate and our future quantity and quality of life. We enjoy life, we just enjoy different aspects than may not be the cultural norm. We don’t hate food, but we just must be so very, very careful with it; it affects our long-term and short-term futures. Please understand, we don’t mean anything personal by it, it’s something we must do.
I know as a diabetic, many of us have other serious diseases not associated with the diabetes. I was recently diagnosed with Ataxia (more with the symptoms than the actual cause). And I am still trying to find out the cause and have been referred to Vanderbilt Hospital’s Neurology Center.
I have had T1D for 23 years now, and I would say “battling it,” or “fighting it,” but it’s kind of depressing having a battle for that long, although I figure it beats the alternative.
For those of you fighting on 2 fronts, or 2 diseases, what is some of your strategies or advice?
On the one hand, I feel like my plate is full, I don’t need another serving of anything. On the other hand, with 23 years of experience, I should be well-conditioned and well-versed to tackle this next front.
Have you hit a wall? Is there someone thinking or telling you there is no wall, “it’s all in your head,” “you can beat it,”etc., etc.?
There’s a wall. Maybe you haven’t hit it. Maybe, you’ve found a way through it, around it, or over it. But it’s there. The old saying “what doesn’t kill you just makes you stronger,” leaves out an important point: eventually something kill us. All of us. On that journey, we often have obstacles to overcome; everyone has something. As diabetics, often the challenge is to live as “normally” as possible. To live, sometimes marry and have children, sometimes to devote ourselves to serving a cause, sometimes all four, sometimes only one or two.
Wherever our paths go, there are sure to be challenges, obstacles, seemingly barriers.
My reaction or solution has been to go on, change course temporarily perhaps, but keep moving, keep going on going on. I am curious for myself and maybe others, what has been your solution to overcoming?
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