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

Time calculus

There was a time when I was that person who claimed I didn’t have time to exercise. To me then, exercise was a waste because the other things I was doing with my life seemed far more important. In fact, I was that person not all that long ago. But today, as I was walking, I came to a sudden epiphany that my view was myopic in a specific sort of way.

The fact is, for the year and a half before I ended up in the hospital, my health was deteriorating whether I was willing to admit it or not. I lost some or all of many days to illness and fatigue to the point I was no longer able to do the things I needed and wanted to be doing.

If we imagine that state resulting in a loss of four hours of productivity a day as an average, I lost something along the lines of 2,190 hours of useful time due to bad health. And that was before I ended up in the hospital.

In that hospital, I lost six full days, an additional 144 hours, and since I have been home, my productivity has been minimal to the tune of a couple of hours a day, meaning for the last 30, I’ve easily lost 240 more hours beyond that.

In total, since the true beginnings of this current episode, I’ve easily lost as many as 2,574 hours of productive time, and that’s probably a conservative estimate.

In contrast, since I have returned to walking again, I’ve spent about an hour each day. If I were to simply stick to that amount of time, it would take me more than seven years to “waste” the time I’ve already wasted walking.

And, as anyone exercising knows, fitness is not a waste. Rather, since I have returned to walking, I am getting stronger, my head is clearer, I am less fatigued, and I am more certain of my recovery than I have yet been.

So, even when I reach my eventual goal of two hours of exercise a day, I will really be gaining hours more of productive time rescued from what once had been the time waste of my poor health.

I get the logical explanation isn’t for everyone, but the nature of this realization makes me even more eager to continue. I will improve because of what I am doing, and that can never be a waste.

DLH

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

Abnormal weather can mean a new normal

I have to admit that I am looking forward to the weather coming at the end of this week and next week, even if it as abnormal for this time of year and represents what will likely be an early spring and hot, dry summer. Selfishly, warmer, dryer weather means better chances to get outside and walk, and that’s something I really need to do.

The weather also has me thinking about my garden and the springtime activities on the farm. We have a lot of work to do this year, and the earlier we get started, the better.

What kind of things does the arrival of spring make you think about?

DLH

Roller coaster recovery

I’ve never been seriously ill before recently, so to say that the long term effects of having been seriously ill have taken me by surprise is an understatement. In the past, I have usually been a fast healer, so despite the severity of my issue, I imagined from the very beginning that I would be back up on my feet in a matter of weeks.

I couldn’t have been more wrong.

Now, granted, the general trend over the past few weeks has been improvement, but the fact is that, while there have been mostly good days, the bad days stand out in their capacity to knock me on my rear end.

The past couple of days have been bad days, the kind that have taken it all out of me. I’ve gone from grouchy to downright foul as I hurt, ache, and struggle with fatigue. Somewhere in there, I know this is not a permanent state, but the physical and psychological effect of even a temporary setback is large for someone as determined and impatient as I tend to be.

Bad days also serve as a warning. ThisĀ illness damaged my body, and some part of my illness was the result of a bad combination of willful ignorance and impatience with my body warning me it was not okay. In some ways, I’m glad the bad days happen to remind me I can’t go back to the way I was without the risk of repeating what happened.

In short, then, the bad days will happen, and I have to learn to live with them because they’re now part of the package. It’s not going to be easy, but it is necessary.

DLH