The chaos dance

Two steps forward, one step back.

Nighthawk is home from the hospital. He came home last Friday, along with all the supplies necessary to do antibiotic IVs from home. It’s not an unusual step for the treatment of Cystic Fibrosis and it sure beats being cooped up in a hospital where you have no control of your schedule, or who handles your care, or any of the fun details like that. And we have vastly superior mattresses, pillows, blankets, televisions, computers, and food than the hospital could provide.

On the other hand, there’s a regimen and routine to hospital life that is easy to adjust to when you are too sick to function, which you lose when you get out. Now instead of someone waking you to start your IVs, you up have to wake yourself. Instead of someone bringing your inhaled medication to you pre-assembled, you have to get up and put things together yourself. Instead of the medical staff coming to you (albeit on a schedule you can’t control, and for maybe 5 minutes), you have to drive to their office yourself. You finally get to sleep as solid six hours without the patient in the next room coughing or screaming or machines beeping, but you use all the extra energy taking care of yourself when you are awake.

Two steps forward, one step back.

For me, last week was three trips to Philly, four (somewhat abbreviated) days of work, and a lot of just trying to get my head back in the game. An eight-hour day interacting with a couple dozen people at work, followed by a half dozen more after hours in the act of caring for my household is more talking than I did in three days at home. Even just the work of driving was new for me, since a month of drugs that prohibit the use of two-ton boxes of metal is enough time to forget how many of your senses have to stay in “full alert” mode when you’re in charge of the big metal box.

To paraphrase my uncle, my mouth was writing checks that my body couldn’t cash.

By the weekend, having picked Nighthawk up and gotten him settled in at home, straightened the house and generally improved everything, I was running low-grade fevers and getting winded just walking the dogs around the house. So my second week back at work started with a half day, and then a half day of doctor’s appointments, x-rays, and blood tests. And orders to take Tuesday off.

Two steps forward, one step back.

The diagnosis, when all was said and done, under the opinion of two different doctors, is exhaustion. Tonsillectomy, pneumonia, sick dogs, hospitalized huband, gee, I don’t know where that might be coming from. The treatment is “Eat more protein, take your mulit vitamin, and rest. If you have to go back to work, take it slow and start with half-days.”.

And this is where I struggle, because on one hand, the doctors want me to “rest” until I have energy enough to function. But the insurance company that ensures I get paid during this timeframe works in absolutes: rest for how many days? All day or half days? With what restrictions for returning to work? The doctors, trying to protect themselves and knowing they can’t predict how long it will take me to rest and heal, say it’s up to me.

And I don’t know. I confuse responsibility with health on a regular basis. The responsible thing to do is take care of my husband, and take care of the dogs, and take care of the bills and the house and all of those things. The responsible thing to do is go back to work and earn a paycheck and contribute to society. I’ve generally been a healthy person — or at least a person who, when I got sick, would bounce back in 24 hours. Napping and reading books and playing the occasional video game in the name of “rest” is so far down my list of responsibilities that medieval monks would need to go to the second scroll to find it.

I thought I was responsible enough to go back to work after the first two weeks, when I could barely talk, was still in significant pain, and running constant fevers instead of this off-and-on nonsense. (“Am I healthy enough?” never really entered my mind.) After the third week I thought I was responsible enough to go back, but my healing wasn’t where it was supposed to be and it was more responsible of me to follow the doctor’s orders. Last week responsibility to my husband and my paycheck won out over responsibility to my immune system and despite the fact that my throat and body are healing very well, I used up what few reserves I have left.

Two steps forward, one step back.

Having visited doctors and rested most of Tuesday, I went in yesterday feeling much better than I did over the weekend, and decided I didn’t need extra time off. I could persevere so long as I got to bed early every evening. I attended two meetings, ate lunch with and cheered up a good friend, cleaned out my email (again) got a two-weeks-overdue report out the door, and despite drinking copious amounts of caffeine, almost fell asleep at my desk.

(I really need to take away my mouth’s checkbook.)

I finally started to believe the doctors about this whole “rest” thing. (One of my docs had said “Now you understand why people die from pneumonia.”) I arranged for the paperwork necessary to go back for half-days for a week and a half (look, absolutes!), and planned to start them today.

Except that today, Nighthawk woke up as sick and exhausted as I’ve seen him since he went into the hospital. Even just trying to do his own medications was going to be a serious drain on him. And a visiting nurse is coming over today, which only adds to the chaos and disorder. So rather than work a half day, I’m at home taking care of him, and trying to grab some rest when he’s napping.

Tomorrow I’ll be healthy enough and responsible enough to go back to work for at least a half day.

Tomorrow, tomorrow.

Two steps forward, one step back.

Two steps forward, one step back.

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