On a day when I feel less shitty, I am a very productive person. I am Supergirl! Contrary to popular belief, sick people are not lazy people. This point of sick versus lazy is an important point. On the days that I feel not so bad, I get done all the of things I must do so that I can do all of the things that I want to do.
These must do and want to do activities fill my day completely.
When I have those days of feeling fantastic, with a schedule full of must and want activities, I wish I had more hours.
A group of us (other Chronically Awesome types) were discussing this one day after Chronic Chronicles the podcast, and about how we wanted more people to understand this. There are days when we are superheroes amongst the Chronically Awesome.
Oh the day (dramatic pose, hand over the forehead), that our doctors would understand that being in just a little less pain could make us a lot more functional. We would be out there doing more, being more. Leaping tall buildings with our canes like pole vaulters. (Or finally without our canes!) Understand, we want to do this clear-headed, and we don’t expect to be completely pain free; just functional, normal humans.
Yesterday was the day of my nightmare trade-off from my trip to Vegas. When I think about how much pain I was in, the first thing I think about is how much I am losing. I lost an entire day of productivity.
I was able to sweep and vacuum and to take one call for work. That was it. I slept, and I took a bath. That is not a day of productivity at all. That is a day of nothing. That is a day lost to pain. The only reason I swept and vacuumed was because if I didn’t, I would be sitting and thinking of the nausea and the fever and how the backs of my teeth and my hair and the very tips of my toenails hurt. I needed to move and have an adrenaline rush just to not scream.
And yes I said the backs of my teeth hurt.
Contrary to popular belief, lying in bed all day is not fun, it is not relaxing, and it is not a sign of being lazy. It just plain sucks. If I had it my way, I would go back to the days when I could work ten to twelve hour days. When I could be the one responsible for entire departments and projects with no one wondering if or when something would get done. My way: it does not mean that pain would not exist, that is not realistic. If I had it my way I could manage this garbage with a reasonable expectation that when I went to bed each night that I could get out of bed in the morning to face a full day of being human. I don’t think my expectation is too high.
I may seem a bit angry; if I seem so then I am not stating this incontrovertibly. I am not a little angry. I am really pissed off. Not at anyone or anything in particular. It’s a frustration thing that cannot be targeted, and that is a really big problem. Generalized anger is pretty dangerous. All I really know is that the ebb and flow of illness not like a lovely, soft beach tide that brings in shells to collect and reminds you of that vacation you once took as a kid.
This is more like I have heard hurricanes are like. The storm surge that slams you against a sea wall and takes you under until it’s done with you, then spits you back out to recover, gasping on a beach. When you feel you’ve got your breath and the sun is shining on you, that is just the eye. Once that center has passed over you, the next band takes you down. Often we are given an umbrella and if I am getting the point across I hope you see that an umbrella isn’t really going to cut it. So, I am laying on a sunny beach today, catching my breath. I am angry and I am wondering how wide the eye of the storm is. Maybe it’s passed for now. One never knows.
I lost a day yesterday. It was just one. I have lost many others, and I am sure I will lose more in the future. I will deal with it. Sometimes this is how I deal with it. I come here and pitch my fit. It’s productive. It’s targeting the anger a bit. I am going to cook a big dinner for my family tonight while I can.
An Aside: I used to “work with” a guy named Reuben, and a sweet young lady named Rebecca at the Costco pharmacy in Laguna Niguel. They both always made me smile. Since moving to Playa Vista, I have yet to establish a relationship with the staff at my local pharmacy. I believe that relationship is as important as the relationship with my doctor. I am at the pharmacy more often than some doctor’s offices. These two were great. They always knew when I was suffering and had a kind word.
I told Reuben this story:
Lupus is like a Vegas slot machine. You put in 4 quarters and sometimes if you are extra lucky you may get two quarters out. I had a great vacation; I threw a bunch of my quarters into the machine, and I didn’t have any left when I got home, but it was a worthy trade. I had fun with my family; never trade a chance to share good times with your family.
Contrary to popular belief, sick people still have fun.