I wrote a book called Friday Tired. I had the title before I had anything else. I'm so tired that I feel like it's Friday on Monday morning, so by Friday, I'm beyond any kind of tired I can describe. Still, I work 15 hour days and write this blog and do as much systemic advocacy to change the health care system as I can. People say I do so much, and compliment me, as if I had a choice. But it's not so much a choice as it is a necessity.
In a strange way, work is transgressive for me. It helps me to surmount my fatigue by giving me a reason, by getting my juices flowing. When a patient needs me, the energy is just there somehow. Sitting around doing nothing, I can't move. But when the phone rings and a mom is in tears because her child is sick and she's afraid, somehow the energy comes to me. It's never a battle when there's a cause; it's only a battle when I have time on my hands. And then, the fatigue makes it too hard to have any fun.
Somehow, I have to find a way to get it through my thick skull that fun is as important as work. Sure, helping people with horrible health-related problems is critical. Often, their needs are urgent and severe. But too much of the time, I wonder who will take care of me -- and the only answer to that question is and must be ME.
If I use my down time to go out with friends or shop or see a movie, then, I worry, I will not have the energy to work. But if work can be transgressive in giving me the energy to surmount my fatigue, why can't pleasure be the same?
This is very old and part of my family dynamic. Mom was flighty and irresponsible. Dad was responsible, and showed that by working all the time, including at home, with his drafting materials strewn about the dining room table. Early on, I decided to emulate my Dad in this respect. Indeed, I sort of had to; I had to help take care of my Mom from the time I was very young, when she would take to her bed with a migraine, or simply need to be entertained. I could not BE Mom and take care of Mom, so that left Dad as my role model.
Maybe it's time to be less afraid of being like my Mom. It's not as though I'm all of a sudden going to become irresponsible and flighty. But one thing she had right and my Dad had wrong: work is not everything. I should have fun once in awhile.
I think I am going to work on making fun as transgressive of my fatigue as work is. Except if I work too hard on it, it sort of defeats the purpose.
Shedding one's innate habits is difficult. But I'm going to keep trying. Jennifer
Hi Jennifer,
ReplyDeleteI completely respect what you have written regarding choice. I really believe it is helpful to have an open discussion about this subject without people being scared to death that you are going to hurt yourself. We have to be able to communicate without fear to help people understand us better. Please keep up your wonderful work...you have made a difference in my life and I am sure to many with chronic illness. thank you. Lauren
Thanks for the support, Lauren. It helps. Jennifer
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