***Posted earlier on my Facebook page. Because I received many comments, I wanted to share my story here as well. I’m sure many can relate.***

I so was not in the mood, but my husband needed clothes to workout. He asked me to meet him for a cycling date.

All I could think about is what I preached at Wellapalooza 2015, and what Lara Bloom talked about last night – our muscles do what our tissues cannot. A conditioned body handles the comorbidities associated with Ehlers-Danlos syndrome (EDS) much better than a deconditioned one. Dr. Theo even discussed something similar concerning mast cell patients at Wellapalooza as well (so many of us fall under the mast cell category as well). And even though I’ve remained active over the last 9 months, I’ve had some serious muscle atrophy from not moving so much during the day. I’m not talking PT or even my intense cycling classes, I’m talking about the fact that I have not been moving as much during the day because I’ve been sitting too much to work on the computer (AKA – Hot Mess).

The effects have been shocking and they honestly make me angry. Sometimes, it seems so unfair that those with EDS have to work so hard just to keep their bodies together and to achieve as optimal functioning as possible, but it is what it is. We cannot argue proven facts as we know them now. I also cannot deny how much of a difference staying active and moving as much as possible throughout the day, has made for my body, over my lifetime.

As I told everyone this weekend, it’s about what you can do each day, not what you can’t. Some days, I can bang out three classes, clean my house, work a full 8+ hours and play with the kids. Other days, I feel velcroed to the floor and can only get in “just 5 minutes.”

Many times, “just 5 minutes” looks like a bunch of bridges while laying in bed, standing heel raises to help with leg pain and to prevent blood from pooling, or it means 5 minutes of isometric exercises (i.e. “Squeeze your butt!“) when sitting in a chair, or working at the computer.  A clip from my discussion at Wellapalooza 2015 is below – we talked about this exact topic.

Those at Wellapalooza laughed, but I was serious — I try to do something to keep my muscles as strong as possible all of the time. I’m always moving and yes, I squeeze my glutes all of the time when sitting in a chair. I have to because my glutes are the first muscles to atrophy.

There is always something we can do, no matter how small. The point is to keep moving, some way, somehow.

So today, my pity party is over, because the EDS spiral has gone too far, and for too long. Being sedentary active isn’t enough to do what I know is needed to keep my body as strong as it needs to be.

My plan is to move more throughout the day again (or take more breaks), try to find a way to make a desk on my indoor spinning bike, and put together a challenging program for myself, between now and when we leave for the Keys. I also plan on going back to PT once a week, in order to keep up with my neck strengthening program and to help with pain.

Want to join me? Find me on Twitter (@SFHEDS), Instagram (@SFHEDS) & Periscope (@SFHEDS, @Wellapalooza & @EDSWEllnessSol)