Left shoulder, left wrist. Lumbar spine. Collarbone. Hips. Maybe an ankle, and if I’m lucky, my sternum. Add in the SI joints upon standing for good measure.
Every morning, I wake up and pop myself back together before setting foot out of bed. It’s a ritual, a daily joint assessment and reminder that I’m not built like my peers.
While making my coffee, I take four salt tablets with a glass of water and try to work out the last few kinks in my neck. Standing up from getting the milk out of the fridge sends a machine gun-like rat-a-tat-tat burst up the rest of my back, and a little bit of dizziness sets in.
I have Ehlers-Danlos syndrome. My body does not have the structural stability it should; people with EDS have defective collagen, which is a foundational structural protein found throughout the body. It holds together your joints, skin, blood vessels, and everything in between. There are approximately 13 different subtypes of EDS, but in my case, joint hypermobility/instability (including dislocations and subluxations), chronic joint pain, and unusual, frequent bruising are the most prominent. My legs look like I just waded through a crowd of angry three-year-olds throwing temper tantrums and feral fists. I’ve dislocated my left knee twice, subluxated my right shoulder once, and sprained my ankles more times than I can count.
EDS is commonly associated with a dysfunctional autonomic nervous system that tries to compensate for all these structural problems. I also have POTS (postural orthostatic tachycardia syndrome), a type of dysautonomia, that results in improper blood pressure and heart rate regulation; I take salt tablets to keep myself from having low blood pressure spells and fainting. I get lightheaded and dizzy often. Brain fog, blurry vision, and chronic fatigue are no stranger to me. Tachycardia, palpitations, and sinus arrhythmias are daily occurrences, and sometimes I can see my pulse in my field of vision because the veins in the backs of my eyes flutter. I dream of hooking myself up to a coffee IV in hopes that it might give me the energy to survive the day.
Every morning, I perform the same ritual. I notice new bruises, new aches and pains. I put two fingers to my neck to feel for any new pulse patterns and formulate a new plan of attack for minimizing symptoms. I make a new cup of coffee and hope that the new day will be a kind one without surprises.
Zebra doctor 