Worldview: The Rambling Road: When excuses aren’t excuses

A more bitter part of me wants to demand that, before anyone gives anyone with a chronic or enduring illness advice about what they should be doing, they should have to live through my past couple of weeks before giving it.

Now, before anyone panics, it’s just been a tough couple of weeks. I’ve been caught in what I call an “autoimmune loop,” first triggered by allergies, then flowing into everything from debilitating insomnia to blood sugar spikes and crashes. Good times…

I will grant, that having endured that, I’m particularly sensitive when people start throwing around, “Well, all you have to do is…” advice. I admit it. It pisses me off. After spending two weeks feeling like you’re a combination of drunk, high, coming down with the flu, and hopped up on way too much caffeine, that kind of advice hits wrong.

But I’m also listening, and in the course of listening, I have my own advice. I understand those of you trying to help people like me mean well. You sincerely want me to feel better. You believe you have answers, and the fact is that you do.

You’re also not listening.

Almost every conversation I’ve ever had with someone who believes they know how to fix me revolves around a single premise: everything I have to say about why their advice is a struggle is an excuse. I’m here to tell you, no, it’s not.

Yes, I can be doing more than I am. Yes, sometimes, I have to push through the terrible consequences of my current state of health in order to make it better than it is. That is true.

It is also true that, when my blood sugar crashes while I’m walking around the grocery store, so I have to cling to my cart like a lifeboat, and thank God my wife is with me to drive me home because I might not have made it otherwise, and I’m still shakey more than 24 hours later, it’s not an excuse. This stuff really happens. It really does limit what I am able to do. I have to keep in mind that every expenditure of effort I make comes with a cost I have to pay, sometimes for days. That’s not an excuse. It’s reality.

All I am asking you well meaning people to do is to understand that. Modify your expectations by the reality of the health I have right now. Not the theory of how healthy I could be. Not with a guilt trip about how I’m unhealthy because I did it to myself. With the fact that, right at this moment, what I’m experiencing is what is.

Help me with my reality. That will actually help.

DLH

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Worldview: The Rambling Road: A question of precision

Having medical conditions often means medication, and taking medications often means a level of precision whether we realize it or not. Each medication has its own, often unique, requirements for administration that are often, in some way, in conflict with any others.

Add into this the human propensity for mistakes, and you have a recipe for disaster. In my case, this morning, it was a matter of injecting the wrong dose of my long-acting insulin, to the tune of 22 more units than I should have taken.

In isolation, this is not that big of a deal. I will have to keep extra track of my blood sugar throughout the day to make sure it does not drop too far, and because I can’t afford not to stay on track with my regular doses, I will have to make sure I eat enough calories tonight to see me through until morning.

That said, while I happened to notice this mistake and can compensate for it, I wonder how many times I may have made similar mistakes–taking a once a day pill twice or other instances of taking not enough or too much insulin–since this process began.

The fact is these mistakes pile up. Over time, we can’t help but to make them, and they start to have an effect on our health just as surely as the diseases we are treating. It’s an important thing for patients and medical professionals to consider for anyone battling disease.

As for me, I will redouble my efforts to pay attention. That’s the best I can do.

DLH

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Worldview: The Rambling Road: Thirty days

I realized last night, as I finished my first vial of Lantus, that it’s been a month since I got out of the hospital. I’ll admit, it seems a lot longer, and I will also admit that I am frustrated to report that, even a month later, I am still recovering from those events.

That I am epically impatient is both well known and an understatement, but the fact is I can’t help but wonder if some of the things I’m experiencing now are in some way permanent or caused by some yet to be diagnosed condition. It’s always bad to borrow trouble, and I’m told I need to be patient, but I can’t help but think about the negatives.

That said, today it will be 60 degrees outside, which means a walk or even two. That’s not a bad way to celebrate a month out, even if it is with misgivings.

DLH

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Worldview: The Rambling Road: A pain in the…

One of the things I had never considered about having a chronic condition like diabetes is that it is painful, not as much in the sense that the condition itself is painful, but in the sense that the treatment is.

I’ve already learned the lesson of ignoring it–or perhaps enduring it–but at least three times a day, I have to prick or stab myself to check my blood sugar or administer insulin. The fact is these events hurt, not a lot, but still, and I find that pain has an accumulative effect on one’s outlook on life. Now I understand a little better why the people with chronic illness act the way they do.

And it’s not just a matter of physical pain either. There’s further the metaphorical pain of paying for medication, the mental pain of having to be disciplined with diet and exercise even when you don’t want to, and the emotional pain of having to deal with the fact I’m sick with something that is, to a great degree, my fault.

This isn’t a troll for sympathy or a depressive mea culpa. Instead, it’s an acknowledgement this sucks and a warning to everyone who is not this way to avoid it if at all possible. This is preventable pain, but it takes some work and dedication to make sure it doesn’t happen to you. Because, the fact is, this is a pain in all the wrong places, and I don’t recommend it.

DLH

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Worldview: The Rambling Road: Keep your blood sugar in check. Seriously

One of the more disconcerting experiences I’ve had in this journey so far is moments when my blood sugar has been out of check due to various factors ranging from the unknown to my own stupid behavior.

Now that I am on medication and insulin to regulate things, I can tell almost immediately when things go out of whack. When things get too low, I get weak and shaky quick, and when things get too high, I get bone-crushingly tired to the point I have to lay down or I’m going to just sleep where I am.

Unfortunately, this is a new normal for me, but one that has specific and enduring ramifications for anyone trying to be healthy. My own body’s reaction may be extreme, but you may recognize the symptoms in how your own body reacts to food and activity. Those reactions aren’t normal and I implore you to consider them carefully to avoid having to go what I have gone through.

I will be the first to acknowledge that better eating–the real key to blood sugar management and to avoiding a whole host of chronic illnesses–is time consuming, expensive, and sometimes downright boring. It is also one of the best choices you will ever make.

If I may be so bold, consider the following as a minimum: stop drinking sugared beverages of any kind and stop eating refined sugars. That change alone will pay dividends you can’t imagine. If you want to go beyond that, read food labels compulsively (there are plenty of websites out there that will help you learn to understand what’s making you sick) and eat vegetables like it’s your religion. If you want to go all the way, only eat food that you know who grew it. I promise. It will make a difference.

It will be worth it if you do. You don’t have to learn the hard lesson I have.

DLH

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Worldview: The Rambling Road: Experiments

Last week, I learned the hard lesson of not eating too much at one time, something I hope I don’t soon forget. But, the experience got me to thinking about the side effects, especially as they relate to my blood sugar that I am monitoring twice a day.

When I went into the hospital, my numbers were dangerously high (along with apparently everything else being dangerously out of whack…), but a regular course of insulin injections brought them down to more manageable levels. Since I’ve been home, my numbers have still been high, but far better than they were.

What I wanted to find out is whether I could affect those numbers even more by changing my approach to what, how, and when I am eating, how much water I am drinking, when I am taking related medications, and how much physical activity I am getting.

Granted, those are a lot of variables to monkey with at once, but they all have a common component of metabolism, and metabolism is a key factor in my greatest risk factor, that being the fact that I am still well overweight.

As things stand now, I am waiting to eat until I am discernibly hungry, which means that I don’t have a regular meal time schedule as it is difficult to predict when I might be hungry. Further, I am consuming massive amounts of water, right now at least a gallon to a gallon and a half a day. I also increased the time between doses of my medication to spread it more evenly through the day. Finally, I am using a regime of “natural movement” exercises to increase my physical activity as I build up the stamina to do more.

I have been following this plan for about three days now, and the result is that my blood sugar number was in the “normal” ranger for the first time in quite a while yesterday afternoon and again tonight. Granted, this plan is not without cost, as I suspect some part of my fatigue is related to the change in quantity and timing of calorie intake, but my hope is that I can retrain by body to get used to the change and also lose weight in the process.

Presuming my numbers stay where they are supposed to be, I will continue this process for as long as it works or until I come up with something better.

DLH

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