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: When no news is bad news

It’s been a while since I’ve posted, but that’s mostly because there really hasn’t been anything new to post. Frankly, I’ve been waiting for the doctor’s appointment I had this morning in the hopes it would answer some questions about the lingering effects I’m experiencing.

No such luck.

It turns out that, all things considered, my test results came back great. My blood serum numbers are fine. My triglycerides and lipids are improving. My cholesterol is better than it’s been in years. My thyroid numbers are a-okay.

That seems like good news, and it is, but it doesn’t explain why I’m suffering such significant fatigue that I can’t even walk to the end of my driveway and back without being done for the rest of the day.

Frankly, I think doctor’s tend to ignore the fatigue complaint because everybody has it, but that doesn’t mean it’s not real and not affecting someone’s quality of life. I’m not complaining about my specific medical care so much as I am identifying something I think is endemic to modern medicine.

So, as things stand, I’m improving but also not. It’s all well and good for my numbers to have improved, but the fact is that, until I’m not so easily fatigued, I’m not better. How that improvement might come about remains to be seen.

DLH

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Worldview: The Rambling Road: Are we awake?

Unfortunately, sometimes we’re awake when we don’t want to be. Insomnia has many and various causes, but for some people the problem is both chronic and enduring.

I’ve struggled with sleep as long as I can remember. For whatever reason, I’m more awake late at night and I tend to hit my stride just about the time everyone else is ready for bed. Being a night owl makes living what most people call a normal life difficult at best.

But the problem is that it’s not just staying up late. My body seems to have an awake switch that, once its turned on, no matter how tired I might otherwise be, I’m awake. There is no real rhyme or reason to that switch. It can stay on for one day, wake me up in the middle of the night, or in my worst circumstances, keep me awake for weeks.

I’ve learned to cope with that kind of insomnia for the most part, but I’ve discovered that it makes recovering from an illness a challenge I did not anticipate facing. Now, in addition to the challenge of being awake at appropriate times, I have to make sure that I am not so fatigued I cause myself further harm.

That said, it is a problem that can be managed. I have to be careful with when and how much caffeine I consume, and I’m discovering that how much, when, and what kind of calories I consume can contribute as well. As with most things, this is a learning experience, and as I learn, I will continue to share what I know with you.

DLH

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Worldview: The Rambling Road: Talking about the weather

Sorry for the lack of posting the past few days. It’s been a bad few as it turns out.

The primary culprit is the weather. The things going on with me seem to be sensitive to weather and allergen changes, and the up-and-down-again quality of the last week seems to aggravate almost everything.

Hopefully, in the next few weeks, the weather will moderate a bit and this will be less of a complaint.

DLH

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Worldview: The Rambling Road: Invisible disease

For better or worse, it appears I’ve joined the ranks of those suffering from invisible diseases. Invisible does not imply non-existent as so many people imagine; rather, it states that it is a disease that does not manifest itself with outward visible signs others can identify.

“But you look fine,” is one of the worst things you can say to someone fighting the diseases no one can see, because, while that person may look fine, they’re often exhausted, in pain, and dealing with physiological effects hidden from your view.

Being told you don’t look sick makes trying to weather being sick that much harder. What’s worse is that far too many people take their view that no outward signs means no inward disease as an excuse to harangue and ridicule, making life even worse for the one who is sick. This has not happened to me, but I know far too many people for whom that is true.

For me, the greatest manifestation of my invisible illness is fatigue. I simply don’t have any stamina, which means that I have a limited reserve for things like getting out of bed and staying upright throughout the day, let alone exercising or doing the work that I need to. But, I don’t look sick, and that’s frustrating even for me.

I can assure you, however, that I would not be enduring regular visits to doctors complete with blood draws, taking piles of medications, and inflicting daily pricks and injections if I was not sick. Unfortunately, what’s wrong is inside me, and nobody’s quite sure what that is yet.

I’m not saying any of this to get sympathy for myself, but to help anyone who knows other people complaining of invisible illnesses see that they’re telling the truth. They are sick. They are in pain. They are exhausted. They are struggling.

Have compassion. They need it.

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: Pancreatitis makes my clothes fall off

..But, as my wife pointed out and with apologies to Joe Nichols, tequila would have been a lot cheaper…

Lame attempts at humor aside, since the beginning of January, I’ve lost more than 30 pounds as a result of a combination of not really being able to eat for almost two weeks, changes to how my body handles food due to illness and medication, and now being on a somewhat restricted diet missing, most notably, the foods that helped me get fat.

The result has been dramatic, involving everything from flappy skin on my legs and butt to losing a couple of cup sizes on my moobs (c’mon people, laugh). More importantly, I’ve lost several inches off my waist from a year ago, dropping four pant sizes.

This isn’t the way to lose weight I’d recommend to anyone, but it is interesting that one of the pieces of advice medical professionals and various individuals have been giving me for more than a decade finds its realization in illness. It appears my body decided I needed to lost the weight even if my mind was reluctant to do so. The secret, of course, is to keep that weight off in the long term.

Maybe that tequila will come in handy after all…

DLH

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Worldview: The Rambling Road: Brainersize

One of the things I think we often miss in the course of physical recovery is how important it is to keep the brain engaged as well. It’s amazing to me how fast the brain can get lazy and soft, perhaps even more so than our bodies, and how that lazy, soft brain can hinder physical recovery in ways weakness and pain won’t.

I have been fortunate in my own recovery that I am surrounded by family and friends who will not let me degenerate into a pile of mental goo. Whether it’s people physically close to me asking what I’m working on or friends at a distance taking the time to engage me, I owe a lot to these people for keeping my brain active.

Beyond the social interaction, it’s important for me to keep my brain active with the kinds of things that keep me engaged under more normal circumstances. As such, I keep reading though my attention span still suffers. I play computer games because there are few better ways to keep a wandering mind moving. I’m slowly starting to work on art and writing again, though those things are going to take longer to happen than I thought they would. Eventually, I’ll get back to my tech tinkering.

Overall, what I learn from all of this engagement is that, when my brain is engaged, I actually hurt less and am more likely to commit to the other activities that will make me feel better in the long run. If there was any ever doubt the brain is the master of the body, the reality of what happens when we keep it engaged should put that to rest.

DLH

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