channeling optimism.

Last night I was holding Otis getting ready to make him a bottle. I was being silly interacting with him and Ben says, "Have you had a drink?" (okay, I'm paraphrasing this convo because I can't remember word for word). I looked at him weird and said, "No, why?". He's like, "You're just being really goofy. Don't get me wrong, I like it." So I thought back on the previous few hours and said, "Oh! I had some ibuprofen." He goes, "That makes a lot of sense, you're not in so much pain, so you're being yourself." And then we laughed because it's true. For some reason this interaction really makes me smile. I could dwell on the part that I'm not always myself. But instead, I think of the glimpse we did see. When I have these moments it's so freeing. Enjoying myself, being in the moment without having to try. Pure magic. And now Ben knows that deep down his wife is still a weirdo ;) (note: ibuprofen doesn’t always have magical effects. Sometimes things all balance out in my favor and other times they don’t. Unfortunately there isn’t one thing that always works.)

As time has gone on since I was diagnosed with hypermobile Ehlers-Danlos Syndrome I've done a lot of reflection and connected a lot of dots about my life. Even though now I often feel like I don't do enough (this is a mental thing I'm working to overcome), I look back and realize how annoyingly determined I always am about things. I think in those moments it was more about me thinking I should be able to do all the things just like other people. Or eventually I came to the conclusion that I just suck at things. Physical activity being one of them. I tried basketball in 4th grade and was very confused as to what was happening. So the following year I did cheerleading and that seemed to really suit me. I could be happy and I could be supportive for other people. It was a total win-win. And on top of that I could use my one physical skill, being flexible. No matter how hard I tried I could never complete all the challenges to get the presidential physical fitness award. Except once, and I believe it was in 2nd grade or something like that. It was a really big moment. I never had the endurance for running, it was a huge struggle. I basically just decided one day in my head that I suck at sports. Except that was not entirely true. I was also very competitive. I can't decide if I should tell this story. But let's just say competition led me to my first broken arm. You guys, I'm sorry. There is a point to this story. Fast forward to my current revelation. People with Ehlers-Danlos struggle with the endurance for physical activity. We tire easily and our connective tissue isn't made up like everyone else's. So even though I had the willpower and determination to keep trying things over and over and over again. I ultimately always hit a road block that would knock me out or set me back. I've tried numerous times to do fitness programs, couch to 5ks, sustaining daily anything... but I could just never get to the finish line. I felt like a failure. Writing this I'm honestly shocked that I STILL keep trying. I really just assumed that everyone felt as awful and sore as I did after things but were just better people and I was a wimp. Turns out that's not true, at least not completely. Now when I play catch with Theodore in the backyard, I realize that I actually don't suck at throwing or catching! I just can only handle like 15 minutes and then need days to recover. 

I've been learning a lot and still have a ways to go. Now that Otis is here I am able to proceed with some of the things I want to try. Every professional I talk to seems to have other patients with EDS. But they also don't always know how to help them either. The interesting thing is how different the syndrome shows up for each person. It's a very wide range. Most of them all struggle one way or the other. There's the honesty in it. I can take that in and feel defeated at times, but I mostly just see it as a challenge. A challenge to find a way to balance my life to be even better and better. And then share that with anyone else who wants to know about it so they can try it too. 

So here's to a new year and more adventures. Am I nervous? Heck yes! But will I keep trying new things? Heck yes! Stay tuned for updates on all the things I'm doing. If you want to, of course.

Love you all!

Ash