There's so much to address in the topic of what I do all day, but I'm starting with the basics: Activities of Daily Living, or ADLs. This is the stuff of daily life...eating, sleeping, self care...and the minimal stuff it takes to keep going, like paying bills, making and attending medical appointments, basic housework, and pet care.
This is the stuff that I used to breeze through with effortless efficiency.
Self Care
Anyone who has ever lived with me, vacationed with me, or even spent a night with me knows that it takes me 20 minutes to get ready in the morning. Start to finish, showered, dressed, hair and makeup done, 20 minutes.
That was before the brain injury.
Now it takes an hour. And I don't wear makeup or shoes unless I'm leaving the house. Which I hardly ever do. I don't know why it takes an hour to do the same things I was doing before, but it does. There is some added time for dropping things and picking them up, but that's less than 5 minutes total.
Cooking and Eating
Cooking and eating were activities that I could do with ease and surprising speed. I could walk in the door and have a healthy, home cooked from scratch, meal on the table in 30 minutes. I could (if necessary) eat a meal in 10 minutes or less.
Cooking is really difficult for me now. It requires following a series of steps that frequently overlap...which is where I get messed up. I don't have the ability to multitask anymore. On days when my symptoms are bad, I don't have the ability to cook at all beyond boiling water in the kettle or heating something in the microwave.
Eating is also difficult, and it can take an hour or longer to eat a meal. The nausea is gone, thankfully. My sense of taste is starting to come back, but it's still impaired. Food is just fuel to me, it doesn't taste all that good, and I'm usually not hungry. Most of the time I spill or drop some portion of it on myself, despite being really careful.
I have to be really careful about eating. If I'm alone, I often forget to eat. If I forget to eat, my blood sugar plummets and triggers seizures.
Sleeping
My life-long dysfunctional relationship with sleep continues. I never got enough sleep before the brain injury, and that's still the case...although now the requirements for sleep and the consequences for not getting enough sleep are both higher. I need 10-12 hours of sleep nightly to repair the damage to my brain. That happens about once or twice a week. When it does, I know I can take care of higher level tasks (bill paying, etc.) or maybe go out to a store or restaurant the next day. Or I can stay in and work on the backlog of other tasks like housework or paperwork and phone calls.
Most nights I don't get enough sleep, sometimes as little as 2-3 hours. Despite taking enough medications to knock out a healthy rhino, a combination of pain and and irregular brain activity (seizures, hallucinations, other abnormalities still to be discovered) keep me awake. Those nights ruin the next day for me, making it nearly impossible to do more than the most basic activities. Any plans I may have had are out the window. These are the days I cannot speak, when I stumble and fall, when the headaches the are worst, and I wonder when I'll catch a break.
The other stuff: Bill paying, housework, appointments, paperwork, phone calls, pet care
This is all the stuff that has to get done, no matter how I feel, but different jobs can be done with different levels of brain power. Knowing that I need a "good brain day" to pay bills, do paperwork, or make phone calls, I give myself a window of 4-5 days to get these jobs done. The first "good brain day" in that window is when I do them. Housework doesn't need a "good brain day", but it does need a "good pain day", so I pick away at it when my pain levels are reasonable. It may take me 3 days to get the bathrooms clean, but I do it at my own pace.
Pet care is a different story. It doesn't matter how I feel or what's going on...my boys come first.They depend on me to take care of them.
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