“A day with EDS.” The idea of describing this makes me want to protect everyone I know from the discomfort. I don’t want people to feel bad for me; I don’t want to be associated with this condition. I don’t want people to be uncomfortable. That’s where I stop myself, because when we’re comfortable all of the time we can’t grow. Growing is a beautiful part of life that is often hard but rewarding in the end. So here’s me growing:
Almost every day I wake up in pain; my back, hips, and shoulders ache. I battle my way through various pillows meant to provide relief. Even laying in bed can exhaust a Zebra. Stretching helps, but can’t be done at length in the morning (for me anyway). I pull out supplements, an anti-inflammatory, CBD, and Cromolyn for MCAS. Most days I make breakfast for my family, and this usually brings me joy while I drink a cup of tea and assess the day’s pain level and requirements. On a good day I’ll start bread from scratch. I start work at a standing desk, and stand as straight as I can to keep my alignment, then remember I forgot to put on my Body Braid. It makes me feel like a proud Zebra; I haven’t figured out why. Harder days involve transitioning from desk to couch, and sometimes outside depending on the weather. Different areas hurt throughout the day. I take conference calls walking as often as I can because I hurt least when there’s movement. Otherwise I have a heating pad and my frenchtons (great emotional support and heaters). Some days I get a week’s worth of work done in a day; other days I pray I didn’t say something stupid to a client or coworker because of pain induced brain fog. I genuinely care about my work; I wish I could give more of myself to it and my team members.
The pain is usually worse in the afternoon and early evening. I make dinner, I sit with a heating pad while we watch a show or play a game. I am constantly getting up and down or shifting, trying to relieve tension in my body. At some point I will dedicate 15 – 45 minutes to exercise. Every day. It includes movement designed to build muscle and increase endurance, ranging from lifting weights to cardio dancing via the Oculus Quest 2. The Oculus has been a real game changer for me and I highly recommend it for Zebras and anyone looking for a fun way to get your cardio up.
Yoga happens each day as well, and helps me guesstimate how the next two days will be symptom wise from exercising. If I think it’s going to be particularly bad, I take a hot bath with epsom salts. This usually helps curb recovery time.
Some nights when laying in bed I list off what I didn’t get done, what I didn’t do perfectly, and what I missed out on. I think about all the mistakes I’ve made and the people I’ve hurt. I’ve never wanted to hurt anyone, but that doesn’t help with the self induced guilt trip. I used to let this guilt rule my mind. Through the process of accepting my life with EDS, I realized that though I can’t control what my body feels, I can change the way I think and treat myself. I can let go and let God. So while my body may be different every day and cast me in a shadow of pain, I can still be my own best advocate and hopefully help some fellow Zebras along the way.