I was thinking about all of the work it takes to troubleshoot and evaluate where your diabetes management is just not working for you.
The thought struck me:
I don’t want to fix it – I just want it fixed!
That may be where something such as diabetes really is so much different than other conditions. For the most part, it is up to us to “make it happen”.
It’s not a matter of catching it early and having it treated – it’s a lifetime of counting and calculating, lows and highs (blood sugars and emotions) and the threat of scary complications if you don’t do your job well enough.
Diabetes is unique in the fact that we are said to have the ability to “manage” the condition. For that, to some degree, I am thankful. But on the other hand, would it be so hard if it were completely out of my control? My prescribed treatment either works or doesn’t.
It would be more acceptable if the demands of living with diabetes weren’t so unreasonable, so interwoven into EVERYTHING!
What other condition do you know of where there is so much intensive training to better understand the disease – DONE BY THE PATIENT!!??
And what of this is driven by the fear of feeling guilty? If you do develop some complication, is it your fault? Have you somehow not tried hard enough?
Maybe its not even the fear of the complication itself – but the guilt that goes with it? While I’m sure the complications do suck very much, we are taught that we can prevent them if we manage our bg’s well enough! That fact alone almost automatically straps a big load of guilt along for the ride.
To say it is up to me to “make it happen” also sounds like it is an “event”. Something that can be worked for, happens, and is over. Something like that might be achievable. But those with diabetes have to “make it happen” all the time. Every minute of every day.
And who wouldn’t get worn out “making it happen” ALL THE TIME? No mortal human!! Who would not get tired, having their guard up non-stop, forever? Even sleep is something we have to calculate and plan for!
The difference between “fixing it” versus “having it fixed”. The thought just kind of struck A cord with me.
Oops. That was me. 🙂
“I don’t want to fix it – I just want it fixed!”
Oh, yeah, totally. Though honestly, Scott, I can apply the same comment to multiple areas of my life. I think we know diabetes and we know the many things it takes to manage it well – and it feels unique. I expect that most chronic conditions are the same – yet different.
Someone told me once, that if we could dump all our problems out on the table, free to leave them there and take someone else’s problems, we’d probably end up taking our own home again. I think that some of the same things I hate about diabetes I also appreciate. That I do (or can) have some control over it. That I can make a difference in my disease instead of just having to cope with having it.
Me: Candy makes you high? Well that’s just stupid, I LOVE candy…HA! TAKE THAT! I just ate some candy….so THERE!
Diabetes: (deals me a staggering high blood sugar carb craving so I feel the urge to eat even MORE candy)
Oh…I love this. Yes, yes. That is so me. Just add the urge not to test so I can deny the result.
i hate this condition. or is it just my life i hate?
Scott!
I was just thinking about this the other day! Someone I know has recently been diagnosed with Marfan Syndrome. If you don’t know what this is, it’s basically a condition that affects the connective tissues in the body. This has all sorts of potential complications, the most serious having to do with heart problems.
We were discussing how different diabetes is from Marfan Syndrome. She basically has to “wait and see” if complications will arise, with little she can do to prevent them. Diabetes puts much more control in the patients hands, but then again, a lot of responsibility and thus, guilt!
Very interesting disease we have.
Darn, Scott, I thought you were offering to be our “Mr. Fixit Man.” Wait, isn’t the doctor supposed to be that? Darn, can we get some help around here, please?!
Well said.
Guilt is huge in my universe of “bothersome thoughts”, because I had many, many years of not taking care of myself (and shame comes a close second).
I think back to the days before the DCCT when no one knew for sure whether or not control made a long-term difference. But, once the results were in………………..
I guess it was a relief to know that good control did, in most cases, affect the occurence and severity of complications, but then, when good control doesn’t happen (for a b’zillion different reasons)I think we are bombarded with a huge emotional overload of guilt, shame, fear and frustration.
I really liked each of the comments here that preceded me – such great bits of wisdom.
Take care,
Kathy
“It would be more acceptable if the demands of living with diabetes weren’t so unreasonable…”
HAHAHA! This is fabulous. I have never thought of diabetic demands as “unreasonable”, but oftentimes I totally act like it is unreasonable in a completely unreasonable manner (I’m acting out).
Me: Candy makes you high? Well that’s just stupid, I LOVE candy…HA! TAKE THAT! I just ate some candy….so THERE!
Diabetes: (deals me a staggering high blood sugar carb craving so I feel the urge to eat even MORE candy)
I don’t feel in control of my diabetes. I don’t feel in “charge” of my diabetes. I don’t think that if I am the best I can possibly be that my diabetes will be the “best” it can possibly be. I think I am going to have a high over 200 at LEAST once a day, but if I’m in the “good” zone at least 80% of the day I feel pretty decent about how I am doing. I don’t really guilt trip myself over the choices I make in relation to diabetes, but I get PISSED when other people try to guilt trip me.
I think we can only do what we can do, and no more, and no less. Go into each day knowing that you are doing the best that you can. Do not doubt your best intentions. Some days are better than others, yes! I think that is all we can do, really.
Scott – So true what you say and very overwhelming when you think about it. It is a mentally exhausting disease. I am with you I wish they could give treatment and it either worked or didn’t work and then you know your fate. Sounds sort of morbid when you think of it that way, but true.
It sure is a curse just as much as a blessing to be able to be responsible for your health and treatment of your disease!
While experts may be right when they say that diabetes is the healthiest disease of the world to suffer from, it is also, I think, one of the most demanding ones. It is 24/7/365 for the rest of our lives – unless the long awaited cure comes along. If one could “just fix it”….. all of us would be forever grateful!
I hear you loud and clear Scott- it is tiring to constantly be mentaly going through the algorithms we are trained to evaluate our “success” by. If this then that, etc, etc, etc. I’m thinking this is why I did well at logic in high school math- my brain was so wired after 16 years of diabetes to think through a process logically. (I have a friend who is a math teacher so it made me think of that analogy)