CHD Awareness Week has rolled around again and I can't help but think about the CHDers we have lost in the last year. I know that, as a 47 year old with Truncus Arteriosus Type 2, I am very lucky to still be here. My heart is currently stable with two mild to moderately leaky valves and some permanent damage and I feel that I am currently enjoying a window of surgery free, arrhythmia free, relatively active years. Things are bound to change in the future and most likely not for the better.
A few months ago I attended an ACHA NorCal Regional Conference in Berkeley and learned about Palliative Care, which should not to be confused with Hospice Care. Dr. Meadows referred me to a Supportive Care team at Kaiser South Sacramento and I got to sit down with a LCSW, MD, and RN to discuss my challenges and brainstorm about possible solutions or support. We touched on the issue of pacing and my ongoing struggle with it. I have never been good at pacing myself. I generally keep going, often aided by caffeine, until my body and my brain start to shut down from sheer exhaustion. In the past I have felt frustrated with my inability to pace myself, mainly because I thought that I was failing at something that I've been taught to be essential for good self-care when living with chronic illness. Upon further reflection I realized that my reason for being resistant to the idea of pacing was worth exploring and it dawned on me that pressure to pace myself felt like pressure to change who I am at a deeply personal level. I have always been passionate and determined to get as much out of life as possible, pushing myself is very ingrained and few things feel as good to me as getting shit done or being out in the world exploring new places. I often push myself hard for a few days and then spend several days recovering afterwards, unable to do much more than sleep and rest. The LCSW on the Supportive Care team suggested that I think about what the pay off is for this way of coping and whether it was worth it to me to continue as before, or whether it's really something I would like to change.
Change seems to be in the air so far this year and I am discovering a new understanding and appreciation of my coping mechanisms. All in all I feel that I have done remarkably well at taking care of my high maintenance body and battle weary mind. While I feel comfortable making a few smallish changes I have decided that I am not willing to try and overhaul my entire coping style. I have cut way back on coffee and am now drinking only green tea most days. I'm also making time for knitting and other relaxing pastimes. I've managed to lose 10lbs by eating out less and cooking more, and walking around on campus 4 days a week instead of the 2 days a week from last semester.
Most importantly, I have worked on my personal relationships and taken steps to change things that were no longer working for me or making me happy. Our time here is precious and I wanted more passion, adventure and stimulation in my life. I want to feel alive. I want to love my life. This is still possible for people who live with CHD and other chronic health problems. We have to work around our limitations but the effort it takes to do so is well spent.
So get out there and live big beautiful passionate lives, people! Don't let your CHD hold you back all the time, I know that it's inevitable a lot of the time and that our version of a big beautiful life won't necessarily look the same as a healthy person's idea of a big life, but we can find ways to do some of the things we're passionate about. Let's love these crazy lives of ours, come what may. Happy 2019 and happy CHD Awareness Week to you all!
