Born with a sunny disposition and high energy, I found myself appreciating the concept of allocating my limited energy when a common virus, the chicken pox, attacked my fragile immune system. With my balance out of whack and the stories of many Spoonies on my mind, I began to wonder, “Why is it so hard to take care of ourselves?”
While taking my mindfulness self-compassion class, I realized I could do more. Inspired by the attendees at the Stanford Medicine X Workshop for autoimmunity, and my own suggestions in Genes Are Not Your Destiny at the Festival of Genomics, I decided to take charge and DIY.
First, I went to my traditional MD who took some screening blood tests, which were normal. Yet, I was still not sleeping well and had an unusual amount of fatigue. I was told that this was normal after having shingles. Then my meditation teacher saw me lying on the floor curled up in the fetal position and offered me both empathy and compassion. At this point, I was receptive to someone willing to promise me a healing touch. Next thing I knew, I was using yoga ropes to hang upside down to calm my hyperactive central nervous system.
It worked, albeit temporarily, but I knew I needed more help to make my fatigue and pain disappear permanently. So, I tried to find a health coach, but instead found myself stuck in a cul-de-sac of information.
I had already been on the Autoimmune Summit, the Paleo Summit, the Gluten-Free Summit, the Healthy Gut Summit, and heard about the wonders of diet, hormone balancing, and the thyroid. I’ve read books by Susan Blum, Mark Hyman, Gerard Mullin, and more. I scoured blogs and patient sites. In the end, I faced information overload.
Going forward with baby steps, I chose Mymee as my coach, which helped me start to sort things out.
At first Mymee was a plain vanilla tracking app, and I discovered that I was not a good tracker. I needed to better understand how this work was going to help me in order to motivate me. Mette Dyhrberg, co-founder of Mymee, listened to my laundry list of complaints and effectively came up with a plan to track what is important to me. The customized app has changed my own thinking about tracking and thus my tracking compliance has improved.
I changed my diet, and added a sleep machine, and tried out many more resources from the autoimmune bundle. Results are mixed, but I have not given up just yet.
This post begins a series of posts as I share my personal journey in trying to tease out the complexities of managing a longterm chronic disease. I have tried many methods including, Iyengar Yoga, getting a health coach, tracking multiple variables, changing my diet, and trying to further improve my sleep patterns.
Stay tuned to follow my journey as I navigate through the jungle of health and wellness therapies and form my self-care toolkit.
Read the next post here – DIY: What to Do with Information Overload
I would love to hear your personal journey managing a chronic autoimmune disease! Keep an eye out for our SXSW survey!
Written with Tiffany Simms