Zebra Seeking Spoons

As expected after having several glimmer filled days, my body crashed yesterday. I slept half the day until almost 5 o’clock at night because my body clearly needed the rest, but it was worth it for everything I was able to accomplish over this last week or so.

Writing this blog is such a great emotional outlet for me, and having that outlet helps me manage my pain a little bit better. Plus, I am thrilled to be setting up and facilitating a local Ehlers-Danlos Syndrome support group for people in my and neighboring towns. It’s something that many of us have wanted for quite a long time, but nobody had pulled the trigger. I’m honored to have been the person to start setting it up.

It has been years since I wrote regularly, something that has always been an outlet for me since a young age. I started writing poetry in elementary school and then became a singer and a songwriter for a number of years and attended Berklee College of music in Boston. However, ever since my diagnoses and my endless pain writing is something that slipped through the cracks. I was so wrapped up in pivoting from the life I created to a life with a chronic illness that I forgot how helpful writing is for me. Instead I was stuck in a loop of misery and self pity and brain fog

It makes a huge difference in my state of mind, as does advocating fundraising for others living with chronic pain and chronic illness. I’m so glad that I have found my way back to it and thank you to everybody who reads, respond, and likes my posts. While I do finally have a team of competent doctors on my side after years of nonstop self advocacy, I get the most support from online communities and groups. Being able to attend something in person and actually make some connections with local people makes me so hopeful. Chronic ill illness is so lonely and isolating, but there are absolutely things you can do to remedy that.

Pet therapy definitely helps too