Let’s talk about control.
Universally, the chronic patients I know cling to control of everything they can in their personal and professional lives. That is because, by definition, patients have lost control over the most basic and fundamental part of their lives – their physical selves.
This is what it’s like to be controlled by your condition:
Your eyes open to a dark room. It’s 2:13. AM. You can tell your blood sugar is too low by the lethargy in your muscles. You groan internally. Everything was fine when you went to sleep. Somehow, something must have gone wrong with the technology that is supposed to keep you from dropping too low. Stupid pump.
But you’re not too low yet, so you turn off the flow of insulin and hope everything levels out before you go much lower. The pump only allows you to turn off the insulin for an hour, so you’re not sure whether you want to stay awake until then or sleep.
You must have drifted off, but the next thing you know, the really annoying low blood sugar alarm comes through both the pump and your phone. It will go off every few minutes until you reach a higher blood sugar, even though it takes at least 20 minutes for anything to reach your bloodstream. There is no way to turn it off until then. You roll your eyes and miss your previous pump, where you could set it to be off for however long you needed, go back to sleep, and be fine by the morning.
You acknowledge that you need more than to just turn off the insulin, so despite your exhaustion and the weakness that comes with low blood sugar, you haul yourself out of bed. You don’t turn on the lights.
You live in an apartment, so the kitchen is only a few steps away. Your fuzzy brain decides that, even though you have juice, this is a prime opportunity for cookies. You take the bag back to bed with you.
Low blood sugar causes a compulsion to eat or drink until you’re not low anymore, so you sit in bed, staring into the dark, mindlessly eating cookies and cursing the stupid alarm until the bag is empty.
Dammit. You shouldn’t have eaten that much. Now a high blood sugar will probably chase your low. You really should take insulin to cover the cookie overage, but you’re not sure how much. Your insulin has been off almost the whole hour, and you have no idea how many carbs would have treated the low, so you don’t know how many over you are.
You make an educated guess, plug the dose into the pump, and open your Kindle to read until the alarm stops going.
When you wake up again, the sky is still dark. The first thing you do is check to see how bad the high is. 308. Sigh. You plug in a correction dose and lie back down. You’re so tired.
But you can’t get comfortable because, between the high blood sugar and the carb overload, your right knee and hip are hurting. Badly. You keep rolling to find a comfortable position – sometimes it helps to lie on the side that hurts. You’re not sure why.
The pain doesn’t go away. You’re going to have to take a painkiller. You never take painkillers because all but Tylenol products can exacerbate your kidney disease. You have the good ones in your pharmacy drawer, but that would require you to get out of bed again, and you’re just so tired. At least the stupid alarm shut up with the high blood sugar. The riskier naproxen sodium is right there on the bedside table from when you needed it six months ago.
You decide you really don’t want to get out of bed again. One naproxen won’t be too bad. You take it and hope it’s enough to let you fall asleep again. You turn back to your ebook until the medication kicks in.
When the morning finally comes, you stand in the shower knowing today is going to be a disaster. You can’t take a day off. You have responsibilities. But you feel like you’ve been steamrolled by a Mack truck, and you know getting through the day will be torture. If you can accomplish the bare minimum, it will be a triumph.
I can’t think of one chronic patient I know who doesn’t have to deal with something like this, at least occasionally. Sometimes regularly. Whether it’s pain, fatigue, nausea, depression, or one of a thousand other symptoms, no matter how closely we follow our regimens, we patients are not always able to control what happens to our bodies.
That’s patient life.