Sleep is something that I never worry about, considering the amount of medication I take at night that sedates me.
What I wasn’t prepared for after my EDS diagnosis was the “waking up” part. What I mean by that is that in my sleep, I dislocated my joints. So far it’s been mostly my right shoulder. It’s also happened to both knees, but not as bad.
Today I woke up and immediately I knew something was wrong. I had to roll/prop myself up to sit up. My right shoulder was on fire, and I couldn’t move it. Immediately, the tears began to leak down my face.
I cradled it in my lap, holding it gently so as to not jar it any further. Tearfully, I called my mom and the doctor and the physical therapist, begging someone to take me somewhere NOW to fix it.
I couldn’t breathe because the pain was so bad.
While I was on the phone, I kept pushing on my shoulder and massaging my pectoral area as that’s what my PT did last time.
And then, with a little snap, crackle, pop, it was back in place.
That’s right–I’m so badass that I dislocate my shoulder and pop it back in place on my own. Warrior Princess for sure.
I still have limited range of motion. I still have pain. But not tears streaming down my face, level 10 and hard time breathing pain.
This disease is progressive. I will continue to dislocate things until eventually my tendons and ligaments are so stretched, that I… I don’t know what. I don’t know how EDS ends up. I know a lot of people need surgery. I know that people suffer, silently, with an invisible and really misunderstood disease. It’s rare too, so you’re lucky if you get a doctor familiar with it.
This is a whole new journey for me. The pain is excruciating. The effects on my body are devastating.
I’ve learned how to treat pretty much everything else at home.
But this, this new monster.
Can I give it back?