So, I often say that I have "good days and bad days" when describing my condition lately. However, that phrase can mean different things at different stages of illness. So, I figure I can do my best to describe a day for me, and what makes it good or bad.
I work Monday through Thursday. I work for 2-3 hours in the late afternoon each day. So for now, I'll describe a work-day. I wake up around 10:30 am (yes I require a lot of sleep, and I have adapted my lifestyle to accommodate that need). I can usually get myself breakfast, and then take my handful of morning pills. Without any one of these many morning meds, the whole day would be lost. Then, I rest. This means that I recline on the daybed, and go on my laptop or watch last night's TV (I refuse to watch daytime television, even if I am stuck in bed). The next thing that happens is lunch, which I try to eat around 1:30. I'm never very hungry, but I need the food, water, and my next dose of pills. So at lunchtime, I usually have more of a healthy snack than a meal. Lunch is followed by more rest. By the way, this rest is often not very restful. I have a terrible time trying to get comfortable with my heavy head weighing me down. I often use traction of some kind before work. This "rest" time is also often accompanied by lethargy, weakness, terrible headaches, full-body muscle aches, severe nausea, and an overall sick feeling. Some days, I need to take a bath before work (it would be every day, but I don't have the strength every day. That means, I will need a second Provigil, just to have the energy to get myself going. Sometimes, I need to take a strong pain medication, too. Usually, I get dressed in a rush in the minutes before I have to leave the house. I wait until the last minute, because then I have gotten as much rest as possible. If possible, I drive myself to work. Some days, I get a ride. Other days I cancel. It all depends on the severity of symptoms in the half-hour before work. When I go to work, I struggle to look normal and hide my pain with a smile. It is an incredible challenge of will-power on most days to make it through all of my lessons. Most days, after work, I pick up a sub at Subway on the way home. Then, I crash on the daybed, feeling like I've been run over by a truck. And that's on a good day. I don't get off the couch unless absolutely necessary. I usually need traction again. I "rest" until it's time to go to bed, which is usually around 11:00.
When it's a bad day, I cancel my lessons. Occasionally, this is due to being a complete emotional wreck. But usually, I have a high degree of pain or overall sick feeling that can only be remedied by staying horizontal and hoping to get some recuperative sleep. Often, I have a bad day when the night before was restless due to severe head pain.
The weekend days really vary. Unfortunately, when I don't have anything scheduled, I often find that my body is even more likely to shut down. Many Saturdays, I never get out of bed. Some weekends, I never even change out of my pajamas from Friday to Monday. I just lay around in agony.
I figure this might help people understand my life a little better than a generic list of symptoms. This is how I live. This is why I keep trying new surgeries and travel across the country to be tortured...because I cannot live my whole life like this. I expect more from myself. I'm 25 now, but I hope to get married and even have a child one day (although the possibility of passing my genes on is looking like a bad idea). I hope to get more out of life and have more to offer the world. I know I have more to give. I just need my body to be fixed so that I can do it.
