Four Hours

A year into this journey, a year from the date I count my medical life “changed,” a year since someone put a name on it, I still go back and forth.

Some times, I lie in bed and wonder “am I really sick anymore? I don’t feel sick, and I’m not as tired or in as much pain as I used to be.” Then I realize that I’m in bed at 3 in the afternoon for my nap. In order to survive and somehow thrive in this new world, I have had to make some big changes and small ones. Most of the big ones have been how I handle my schedule and how much I sleep. Several months ago, I figured out that 12 hours per 24 is my optimum. 10 hours at night with a 2-hours nap. If I do this, I can function more often than not. Essentially, I schedule in times for naps and sleeping like I would appointments.

Right around the one-year mark, I got a job that I love. Full-time. That means at least eight hours a day. It took some getting used to, both for my body and mind, after two years of no set schedule and more or less doing as I please.

If you take the amount of time everyone is allotted in a single day, 24 hours, and subtract the 12 I am sleeping, or resting, you’re left with 12. Then, subtract the 8 that I’m at work. Four hours. Four hours is all you’re left with. I have four hours a day in which to live my regular life. This includes getting up and getting ready for work, unwinding after work, doing laundry and cleaning my toilet. You know, the stuff that has to happen on a regular basis. But also responding to the demands of my parents, my brother, my sister, my dog, my ministry, my grandkids, doctors appointments, my friends. Not to mention if something crazy happened like I actually wanted to do something specific just for me! Four hours for doing hobbies and making presents and writing letters and spending time with God and journaling and writing and watching movies and just being.

Now, maybe I’m exaggerating a little. I don’t work every day, just five days of every week. I have two days a week off. This leaves me with 44 expendable hours each week. Sounds like a lot, doesn’t it? Almost two full days worth of hours. Well, assuming the regular person works 40 hours like I do, and sleeps 8 hours a night, he or she is left with 72 hours. Ouch.

On my two days off, I sort of have a schedule as well, only because schedules work for me. One of them is Sunday. Some Sundays, I get to sleep in and go to evening service. Other weeks, though, I get to get up at 5:30 to be at church at 7 so I can do lights (which I enjoy doing.) Then, either before the night service or between services or whenever we can work it out, I get to hang with my sister in some capacity. Sunday is her day. On my other day off, during the week, I schedule any appointments I need to hit and then hang with another dear friend of mine. Good thing I don’t have more than two friends, because I don’t have the energy more! I love knowing that my days off are spent with those I love most.

There are a few other people I’d like to see and go to coffee with, but when? I want to see my grandkids and connect with them and see what’s going on in their lives beyond what they post of Facebook. The only times left are in the evenings or right after I get off work on the days I open. Scheduling gets further complicated when we factor in their schedules, as high school and college students tend to be busy.

All this to say, four hours a day is not enough. I want to be able to see my sister more than once a week. I want to have more time for other relationships and other things I want to do. I’m just not sure how to make that happen.