Tag Archives: illness

When excuses aren’t excuses

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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

Discontentedness

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It’s no secret to those who know me that I am a discontented person. As far back as I can remember, I never recall a time where I was satisfied with anything I’ve done, known, or been involved in. That discontent is what has driven me to pursue education, experiences, and even entire careers.

Knowing that, it then surprises me that my otherwise discontent never seemed to apply to my physical state. For most of my adult life, I’ve accepted weight gain and the creeping malaise of health that goes along with it for what it seemed to me to be: an inevitable sign of aging and poor luck. I’ve even gone so far as to argue against fitness in some absurd justification of being less than what I could be.

Yet, now that I have been laid low by illness, my discontentedness has come into full effect. I am not satisfied with anything. I want to fix it and fix it the best way possible. The issue now is that I’m not quite in a position to act. Ironic, isn’t it?

Nevertheless, I believe my discontentedness will be the thing that drives me forward. As hard as it is proving to be, I will not be satisfied until I master this thing.

DLH

Invisible disease

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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

Pancreatitis makes my clothes fall off

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..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

Already, the first of what I suspect will be many pauses

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From the beginning, I intended this blog to be a blow-by-blow account of my journey, so there are going to be times when that account may be uncomfortable for some or downright icky. If that’s too much information for you, please do not read on.

That said, my digestive system has been fragile since I got out of the hospital, and I have had to be especially careful with what and how much I put in it, lest it get angry, which it does with a certain ferocity.

Unfortunately for me, I don’t have some kind of indulgence to blame for today’s upsettedness, as far as I can tell. I woke up this morning to system-wide discomfort reminiscent of a stomach bug or the way my allergies sometimes wreak havoc on me. Whatever the cause, in my current fatigued state, it’s taking it out of me.

Not to worry, though, as this feels nothing like the lead up to my bout of pancreatitis. I’m paying very close attention to those signs, as you might imagine. My hope is that this will pass and I can get back to the business at hand soon.

DLH

So, what’s this all about?

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It’s sometimes hard to know where to begin an explanation of something that has been coming my whole adult life, so I will start with the event that triggered the birth of this blog.

A couple of weeks ago, I ended up in the hospital for almost a week as the result of acute pancreatitis brought on by a dangerous elevation of my blood-borne triglycerides. The condition was serious enough the doctors opted to reduce my triglyceride levels by removing them using a process called plasmapheresis. The whole experience was the most intense and painful thing I have ever experienced in my entire life, and I realized that I am willing to do extreme things to never have to experience it again.

That brings me to the reality of how I ended up in that state. The circumstances that lead to my hospitalization were not just the result of some unexplained biological malfunction, although there is also that element to the story. Instead, a large part of how I ended up in that state began decades ago when I, for a variety of reasons I suppose I may get into over the life of this blog, chose to stop taking care of my body.

In fact, over the past decade, I had pretty much given up on taking care of myself at all, most often with the excuse I had more important things to do. I didn’t. Instead, that excuse was worse than an excuse: it was a lie.

This blog will be my documentation of the refutation of that lie. Over the course of the next weeks and months and, perhaps, even years, I plan to document my journey away from the lie of not taking care of myself toward the truth of taking care of myself so I can do all the things I do better. I want to share this journey with anyone who cares to follow along for the accountability of it, for mutual encouragement, and to provide a place to document the things I discover along the way.

As to the name of the blog, once upon a time, I considered myself to be a rambler, or as the Irish call it, a rover. I tend to wander without being lost, and have long believed that the journey is more important than the destination. I suspect my journey back to health will follow the same meandering but purposeful path so many other parts of my life have.

So, this is all about finding my way back to a place I should have never left: healthy and productive. I invite you to join me on that road.

DLH