I have plenty of other fascinating symptoms to discuss, but that seems like the major ones for now.
But here, I'll try to explain an "average" day. Which is quite difficult, if you think about the difference between a good day and a bad day. But I'll just talk about the past week, to make it easy.
Basically, I wake up around 10:30.
I prepare and eat breakfast and take pills.
I prepare and eat dinner around 5:30 and take pills.
Around 7:00, I either get dressed, or shower and get dressed.
Then, I can begin my day.
I can go to the store, meet up with a friend, go to the gym, clean up around the house, do laundry, etc.
Too bad I have to get ready for bed by 11:00, even though I'm not tired.
I know this begs the question: what do I do all day? Unfortunately, this question always feels like an accusation of laziness. But to satisfy curiosity, I'll try to answer. Due to jaw pain and dysphagia, my meals take a lot of time. (Seriously, an hour each.) I also have to keep my body reclined for much of the early part of the day, due to POTS. I'm still working on finding energy earlier in the day, whether it comes from salt, Provigil, or something else. But lethargy is another reason my day takes so long to kick into gear. Perhaps part of it is a lack of motivation, because I don't have too many things on the schedule right now, but I do usually have a to-do list, with things that I really want to get done.
This isn't to say that I don't ever schedule activities in the afternoon (although I don't in the mornings). And I need to get used to this schedule, because it's the only time I'll be able to work. But when I do go out in the afternoon, I have a hard time getting through anything. Plus, my body pays for it later.
Another part of it seems to be that I seem to zone out a lot during the day. I blame it on a lack of oxygen to the brain. It's like the world moves in slow motion for me. The little on-off switch in my brain is flipped off all day. And on a good day, it gets flipped back on by 7:00 PM.
So, my life is in a transitional stage this summer, and I'm definitely thinking about everything that is going to change. For one thing, on the day of my marriage, I will no longer qualify for disability. I will also be switching to Wisconsin state employee insurance. So, there's a lot to think about and plan for.
The biggest thing left for me to figure out is that I need to start working again. First, I need to replace the disability income with my own income. Then, I need to make additional income to help in my new household. I have to help support myself, and with my medical needs, that costs a lot. But I can't take on too much, or I will overwhelm my body. But I'll be in a new town, so finding new piano students, enough to make the needed money, but not more than my body can handle, will be challenging. And it's always difficult starting a new business from scratch.
I'll try to post again soon...