I was going to start this with, “this post might piss some people off”, but why bother? Anything that comes out of my mouth might piss some people off and they’ll just have to read at their own risk.
I’ve been out “running” for the past couple of days. After having the doc tell me my lungs are essentially clear, and starting a new Advair inhaler, as well as a new compounded medication for another issue, people may ask, “Why are you running when you should be resting?” My answer is this, I am resting. For some people, resting means lying in bed. I cannot rest that way. If I lie in bed, I will hurt more, sleep less, and my anxiety will reach such a fever pitch that i will first think, re-think, re-re-think, list, list again, rearrange the list, write the list, re-write the list, and eventually lie there, sobbing and depressed and unable to find any value in myself or my world. Rest is not going to fix my physical pain. Aside from the thyroid, and the heart/asthma stuff, most of it is caused by the general inflammatory state, which is basically my nerves telling my body it hurts. So, I’m not doing any further damage by running/walking/hiking/biking/swimming. The fatigue is also a side effect of the inflammation, and my crazy brain and nerves basically lying to me. I am not yet willing to give up living and believe the lies from my nerve tissue. Being outside, seeing the plants, the animals, the sky, and hearing all the sounds of the world, and moving forward, no matter how slowly, brings me peace and quiets my mind. It’s not a punishment for my body, it’s not a test of endurance, it’s a meditation. Which is why it doesn’t matter if it’s fast or slow, if I’m skinny or fat, if my hip hurts, or my foot. I need to move in the world, it’s my connection with life.
So, self-care then. It’s realistically the only self care option available to me.Don’t question the self care of others, unless it’s doing real harm. I’m not cutting, I’m not anorexic, I’m not hurting other people. I cannot quit working to “follow my dreams” or “rest and recuperate.” The kind of self-care defined by the radical self-love advocates we see in the media, the Eat, Pray, Love/go to the ashram/travel the world on $6 a day folks are living a privileged lifestyle I can’t ever hope to attain. Sure, I’d love to stop working, spend all my time with my kids, do art, travel, play, hike the AT for a year, or the PCT, or whatever. This is not an option, and if you’re about to explain to me how I can totally do that, if I just budget correctly, or cut some things out, you are using your privilege in a very ugly way. Sure, I could abandon my family and go on a trip. Spending the money we collectively need to pay for our home, our prior debts due to poor decision making in a time of extreme duress and trying to do the best thing available to us at the time for our kids’ futures, and my extensive health care. But I wouldn’t be doing that with my family, or for my family, and I am not the only important person in my life. I live an extremely privileged life. I’m white. I’m well educated. I’ve moved into the middle income bracket. I have health insurance, and life insurance, and cars, and two mortgages. I have the luxury of being able to homeschool my kids, which is definitely a luxury of the privileged class. I have the luxury of owning my own businesses. It took a long time and lot of work, but it’s still a luxury not available to most people. I also have responsibilities, which don’t allow me to engage in “radical self care.” To maintain my health care with my boutique doctor who is the only one who has even made a dent in the health issues and even pretended to believe that I’m not crazy, but who costs me a monthly fee not covered by insurance, to maintain my business insurance for both businesses, my professional association membership fees, my credentialing, and continuing education, and to maintain my skill set, I must continue to work. Yes, Jacob has a good job, with health insurance. His job could probably cover both mortgages, our relatively small car payment, our life insurance. My businesses, expenses we use for homeschooling, like netflix, internet access, books, camps, classes, the minimal amount of travel we do, the luxury items like fabric, art supplies, raw dog food, pet supplies, all cost money. Medications not covered by insurance, co pays, food. without my income, we could not maintain my healthcare. The irony is, unless I decide to choose to be bedridden by the fatigue, to give up on life, to not run, play, work, I am not technically “disabled”, so I will have to work. I will continue training other people’s dogs until I’m too fatigued to train my own, caring for other people’s pets while they travel, so I can’t take my kids and pets camping for a weekend, traveling for work so I can’t travel for pleasure. I am extremely thankful that I do enjoy the work and do and love the results it brings. I love the people I work with, and am fortunate enough to earn a good amount of money and lots of reinforcement for the work I do. If I was forced to work a job I did not love, enjoy, and feel invested in, my life would feel completely hopeless.
Until we as a culture and country find it more important to fund real health care and real self care for people than to militarize our police forces and build walls against those who would like to join our population, this is the somewhat marginalized life people with chronic illness live. Remember too, I am so, so lucky, and so privileged, my life is much better than so many people who have the same type of health issues without the fantastic personal support and financial support system in place, their lives are often quietly failing desperate struggles to keep their heads just above water.