I was on the East Coast for the holidays. I spent Christmas with my family in New Jersey, and then I traveled down to West Virginia where there was a Healthcare Justice Gathering at Gesundheit, Patch Adam’s land where he’s going to build a free hospital. The experience gave me the chance to think about what I can do to improve access to healthcare in this country, and also about how I want to build community. Since I’ve gotten back though, I’ve spent most of my time in bed with fatigue and muscle spasms. Because I’m an overachiever (and an INFP), all I can think about is how much I want to do to save the world. I fear though that instead, I am going to be this tired for the rest of my life and not be able to do anything.
You see, I never planned to be sick. That was never in my thoughts about what I wanted to do with my life. I mean, I had gotten through a Biomedical Engineering degree in college and then graduated med school. I was on my third try at residency after having my own practice for a year, was working occasionally on the side, and was planning where I wanted to work when I graduated. In June, I started having problems with my short-term memory, but I chalked it up to working too much and not getting enough sleep. Things started to get worse in July, when I couldn’t remember the word ‘pharmacy’ while I was seeing patients. That was when I realized that I needed to at least take time off to rest. I thought that maybe I was just working too much, or I had lyme disease and would get better with antibiotics.
I had put in for a month of medical leave, but as the end of August approached things seemed to be getting worse and not better. On top of memory problems, I have had worsening fatigue, dry eyes, dry mouth, balance problems so bad that I now walk with a cane, muscle spasms in my legs, and problems tolerating both heat and cold. August turned into September into October, and now here we are in January. I’m in bed much of the time because I’m too tired and hurt too much to even be able to do things like the dishes in one go. I guess I forgot to include ‘doing the dishes’ as a major life goal.
I have lived a relatively healthy life, in part because I wanted to live, and be functional, to a ripe old age. I have been gluten free for over 3 years now. I was eating mostly vegan when all this started, and I was also taking vitamins and not drinking a lot of coffee or alcohol. I started running 2.5 miles 3 times a week for exercise. I was generally healthy, had more energy, and felt good. I still support a healthy lifestyle, but I realize now that part of taking care of myself was that I felt like I had control over whether or not I got sick. I certainly had improved my odds of staying healthy longer, so maybe I had included illness in my plans, or at least how to avoid it. Of course that assumes I have control over every aspect of my life (because I do. No really, I swear it…) I guess that’s the kicker: I’m not in control of everything, and sometimes s#$t, or chronic illness happens.