Published on Tuesday, 30 August 2011 13:06
Written by Jules
On a day when I feel less shitty, I am a very productive person. Contrary to popular belief, sick people are not lazy people.
I think this is an important point.
On the days that I feel not so bad I get done all the things I must do so that I can do all the things that I want to do. This fills my day completely. On these days I wish I had more hours. A group of us (other Chronically Awesome types) were discussing this today after the Two Pains in a Podcast and we really wanted more people to understand this. Especially doctors.
If our doctors understood that being just a little more pain free could make us more functional, we would be out there doing more, being more. We want to do this clear headed and no we don't expect to be completely pain free, just functional normal humans.
When I think about my yesterday, the day of my nightmare trade-off from the trip to Vegas, what I think of most is not how much pain I was in, I think about what I lost. I lost a 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. I swept and vacuumed 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, laying 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 clearly. I am not a bit angry. I am really fucking 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 pretty 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. 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 shines on you a bit the eye has passed and 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 big the eye of the storm is, or maybe it's passed for now.
One never knows.
I lost a day yesterday. It was just one. I have lost many others and will lose more in the future I am sure. I will deal with it. This is one way that I do. I come here and pitch my fit. It's productive. It's targeting this anger a bit.
I am going to cook a big dinner for my family tonight while I can.
Thanks to the listeners of Two Pains in a Podcast and to those who hung out afterward on Google+. You always make me smile.
And thank you Reuben at the Pharmacy. You inspired me today and helped me think of this:
Lupus is like a Vegas slot machine. You put in 4 quarters and sometimes, if you are extra lucky you may get 2 quarters out. I had a really great vacation, I threw a bunch of my quarters into the machine and I didn't really 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.