Some Nights

"Some Nights" by Fun. (2012) 🎶

Not to be morbid so soon after my post about fear, but for a long time, I was fairly sure I would die before I turned 60. This was one of the cornerstones of the overly strong mental defenses I developed in my teens and made insurmountable in my 20s. What was I supposed to think with all the diseases I had, including kidneys that only operated at about 50% at the age of 29? And if that were true why bother? With anything?

I unconsciously built my life around that concept. I didn't allow myself to commit to much, not people or activities or work. I never thought about buying a house. I didn't care much that work was a job and not a career. For the life of me, I could not visualize where I would be in five years. I used to tell people it was because every time I tried, everything would change. But it was really because in five years, I could be dead, so why bother to plan?

Then something strange happened. The chronic kidney disease – the one most likely to kill me – started to get better. When I was first diagnosed, I was led to believe that I was most likely on a slow decline toward dialysis and then a transplant if I could get one, depending on how stable I could keep myself. Ten years later, was that not still true?

Generally, it was, although studies were starting to show that if a patient could stabilize their kidney function, they could go on at that level forever. However, there was no evidence that people who reached stage 3 kidney disease ever recovered function.

None of us really knew what was going on. We speculate that I am hypersensitive to dehydration, which makes kidney disease worse, and as I began to exercise regularly, I also began to hydrate better, and my kidneys reacted well. Then again, it could just be that my body doesn't react as everyone else's does. The peripheral neuropathy of my early twenties is all but gone and I was that 0.03% of patients that reacted to amitriptyline with grand mal seizures. Whatever the reason, as my kidney function improved, my worldview began to change.

Maybe I wouldn’t die early. Maybe I would have time to leave some kind of legacy. Maybe I would have time let more people in. Or let any people in. On purpose, that is.

So what now? What do I stand for?

As they say in the title song, most nights I don’t know. It’s no coincidence that I started this blog shortly after I started getting better. Or that I switched employers for a more equal salary and better treatment.

The beauty of it is, I don’t have to know. Not really. Not yet.

It seems I might have time.

Broken-Field Running

Yesterday, I went to see my doctor for my quarterly check-in. Every time I go, I hold my breath until I hear three numbers: hemoglobin A1c (long term blood sugar average) for Type 1 diabetes, and creatinine (long term kidney function) and eGFR (short term kidney function) for chronic kidney disease. Those are the three that have to be in range for me to breathe easy.

This time it was like waiting for the axe to fall. I had been in tight control for years until a really bad work situation knocked me off my routine. The hours and commute were awful, with no flexibility, and I was told that it was a hostile work environment before I even started, but I didn't have a choice about taking a project. In the way of government contracting, I'd been without a project for too long, and I was in danger of being laid off (and losing my health insurance).

It was gradual, but I eventually dropped both my meal plan and exercise routine. Without this, I end up yo-yoing (blood sugar bounces out of control). This makes me tired, which makes me less active, feeds high blood sugar, you see how it goes. I’ve been struggling for over six months. That’s three rounds of blood tests. Every quarter, the monster that is my conditions grows another centimeter.

The kidney numbers have the biggest impact. A couple of years ago, my doctor actually upgraded me a stage of my kidney disease, from stage three to stage two (stage 1 is considered normal/healthy). I’d been convinced that I would need a transplant eventually, and I felt like I’d been given a reprieve from, well, something. It’s the deterioration of those numbers that scares me the most. When the doctor told me that my creatinine and eGFR were the same as last quarter, I thought I’d escaped serious consequences for another three months.

My subconscious knew better. I had been doing better, picking up more cardio and putting limits on my food intake. But, it wasn’t enough to make up for months of ignoring my regimen. I knew I was still out of control because I still felt out of control. I wasn’t surprised when my doctor told me that my A1c was just past the line that marks where you’re safe from complications. More like resigned. Maybe a little disappointed, or a lot disappointed. It had taken a lot of work to maintain my regimen. I had lost a considerable amount of progress, not just in following the regimen, but also in the execution of the regimen. I’d lost strength, energy, my appetite had grown, I’d gained weight.

I want so badly to get back to where I had been, but my motivation is dragging. It’s like having a second job. No, third, with the blog. And I’m just so tired. But without good diabetes control, I won’t be able to do everything I want to.

I know I can’t pick up where I left off. The pain in my shins tells me I will have to work up to my previous running speed. I expect there will be starts, stops, changes of direction, like broken-field running in football. You take the best path you can find, even if it's not a straight line. So I’m going to start small. Task 1: No more skipping cardio. Even if it’s walking, I have to move before work. Oddly, that starts with Task 2: going to sleep on time. (Sleep on time = awake on time = energy to exercise.) Two tasks is enough for now.

Each chronic or autoimmune condition comes with a different capacity for control. I’m pretty lucky. I can control many aspects of my conditions. Not all, but more than most, I think. And the better we get to know our conditions, the more we can exert whatever control we do have.

So, the question(s) of the week: how well do you know your monster? As well as you would like? Well enough to know what kind of control you can exercise? And when you do falter for a short time or a long time, how do you gain your feet again? Do you have a plan?