I woke up this morning, as I do more and more these days, crying out in pain. Due to my Ehlers-Danlos Syndrome my body has a tendency to dislocate joints as I sleep. I wake up teary eyed  as my hips and back scream out. How did I get here? It’s hard to believe that 7 years ago I was working full time as a preschool teacher and living a fairly normal life. The pain was more manageable then. The distraction of work and life helped me get through. That’s not an option anymore.

When you have a connective tissue disease your whole body takes a beating; the fascia that is meant to hold your skeleton together as one is faulty and it’s not going to let you forget it. I’ve gone from living the life I created to living the hand I’ve been dealt. Most days I can’t leave my bedroom. Last year I missed out on a wedding and three family funerals. I’m praying I’m well enough to be there for the birth of my brother’s first child come December.

I can’t remember the last time I saw a friend in person. They all live full lives. I can’t travel far, many days not even to the next room. I get dizzy, my knees sublux backwards, I trip over my own feet or fall in the shower. My digestive system is a disaster and I’m barely 70 pounds and we haven’t found a successful way to remedy that. In so many ways I am always at risk of peril.

Pain has become the dictator of my world. I moved back in with my mother at 36 years old because I am unable to safely or productively get through a day alone. I am so grateful for her for everything she does for me on a daily basis, for helping ease the deafening isolation and loneliness I reside in. She’s my touchstone.

I have learned to begin creating a new life with these cards I’ve been dealt. I have a blog that chronicles my journey, I’ve started a local support group, and I am a fearless advocate for myself and others who suffer as I do. I’m finding ways to reclaim joy and a sense of self, To find meaning in my life as it is now. I still have hope, and sometimes I have good days (I call them glimmers) where I can step back into my former life with utter gratitude.

But I still wake each morning like Groundhog Day, writhing in pain and discomfort. That’s my reality, and its miserable, but I am absolutely going to make the most of it