Every morning I wake up and my first instinct is to not move, because everything hurts. So I don’t linger in bed, because I am afraid if I do, I will stay there. For the first hour or it feels like I am teaching myself to walk, but more its convincing myself that I can do it. Sometimes I sing in my head that song from Rudolph the Raindeer “Just put one foot in front of the other..” As I brush my teeth, most mornings I have to fight vomiting, because I either have a very low grade migraine, or I have a bigger one. I don’t want to eat at all, but I know if I do, it might ward off a bigger migraine. I know I probably have just enough energy to make it down stairs or upstairs, but will really have to push myself to do both. If the cats are yelling its no contest. Even though I know I might be stuck down there a little while, where no real comfortable place to sit, and nothing really relaxing to do, and I need to relax until my body remembers it wants to get through the day. If I go up, I go up without anything to eat or drink, but comfortable places to sit and relaxing things to do until I can move. Somedays I do both, and those I know are going to be better days. When I when I manage a few flights of stairs it gets me winded and I am always embarrassed when a family member finds me winded and asks me whats wrong. My first thought is “I am so huge I can’t catch my breath when I go up and down the stairs”, I assume that must be it, because they know I am sick, and if I was breathing like this from just the effort of getting up the stairs they wouldn’t be asking me why.
On most days I try to arrange the luxury of 30 minutes to an hour of TV or computer to focus on something besides the pain, but something I don’t need a clear mind at all for. To be honest sometimes this isn’t an hour but two, sometimes three, so I try to wake up really early, so by the time I need to do things I am able.
Then I can do something. I have lots of choices. But here is the catch. Its a choice. I can’t do it all. But I want to. You have no idea how much I want to do it all, every day. I am fortunate enough to have several jobs, all of which “work” with my illness. If its a work day, its either only a few hours, or I will have help from my partner all day. In either case, its a work day and that is ALL I can do that day is go to work and do my best. If its not a work day then it might be volunteer work, or lunch with a friend and grocery shopping, putting my laundry away that my husband washed for me a week prior, doing some artwork. Work of any kind gets scheduled weeks in advance. My house, my artwork, even my family don’t get scheduled in and often become those things at the end of the day I don’t have enough energy for. Often I feel like a bad mother, and uncommitted artist, a scatter minded volunteer, and a selfish, thoughtless friend. This is me on a good day. This is how I live when PsA isn’t so bad and I can what I call “fully function”. Sometimes on these days I am in bed again by five, but if I am really lucky I can make dinner for my family, and family dinners are one of the great joys of my life. Its understood if I cook, after I cook no one asks me for anything. In the evenings my head turns off with my body, I am literally unable to answer questions with any accountability or even sense on many evenings. I will save what a bad day is like for me for another time, maybe 10 minutes from now…maybe in a few days.
Thanks for reading. Love the life you have as best you can.