I recently started my 5th or 6th round of physical therapy in an attempt to manage my Ehlers-Danlos syndrome (EDS). My therapist is very knowledgable about the condition, and he often talks to me with real-life and human perspective as he pushes and pulls on me during the manual manipulation portion of my treatment. This past Wednesday, he said something that just rung so true for me, “Em, you’re just made with some extra rubber.” He said it sarcastically because it’s not a perfect metaphor, but it got me thinking about my average day as a person made with extra rubber.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
It’s 6:00 A.M. The alarm on my iPhone quietly sings, and milliseconds later my wrist starts to buzz from the second alarm I have set on my Fitbit. I turn off the Fitbit, and hit the snooze button on my phone. I’m not ready to get out of bed – I never am. It’s not because I didn’t get enough sleep the night before, rather I need to do a quick body assessment. “What hurts?” I ask myself. Today, it’s my knees, right ankle, and right elbow. I give by body a baby stretch and sit up. My snoozing alarm has 3:30 minutes left. I turn it off and start moving to get out of bed.
Click-pop click-pop. The sound that echos through my pitch black bedroom as I slowly swing each leg over the side of my bed. It’s my hips. It didn’t hurt, I’m safe. My knees make that same hollow noise as I press my feet into the carpet. That hurt, I need my brace. I shuffle across my dark room, avoiding turning on lights to let my husband get 50 more minutes of zzz’s. I find my knee brace. It goes on under my pre-picked jeans so none of the ladies I work with ask questions. I finish getting dressed in the outfit I’ve laid out the night before and head to the bathroom, the clock reads 6:10 A.M.
I think to myself, “You have 14 minutes,” the amount of time until I absolutely have to be out of the door. The 24 minutes I give myself each morning to get ready to ensure I’m not exhausted by the time I get to work. I stand in front of the mirror. My hair is a mess. I brush it and it still looks terrible, so ponytail it is. I can’t bare to hold my arm up to bother with a straightener. The two minutes I take to brush my teeth seems like an eternity.
I’m finally done. I brave the steps downstairs and hook the dog up on his lead. It’s cold in the garage. I need to start my car. I have 8 minutes. I walk out front and let the freezing Pennsylvania air hit my coatless and shoeless body. For 30 seconds I feel like a million bucks, any longer and it would start to be painful. I come back in the house and start my makeup. I quickly swipe foundation and blush across my face, and add the tiniest amount of eyeliner. When I’m exhausted at 1:00pm and my eyes start to burn, anything more wouldn’t be pretty. 5 minutes. I bring the dog back in. He races back upstairs to join my husband in bed. I slowly climb the steps like I’m climbing Mount Everest. That handrail is my best friend. I shut my two love bugs in the bedroom and head back downstairs to put my shoes on.
Sneakers. It’s always sneakers. Not just because I walk a lot at work, but because I need the stability. 2 minutes. I put my office keys in my pants pocket, put my coat on, check to make sure my elbow sleeve is in my purse, grab my coffee that I set to perk the night before and head to my car.
It’s 6:24 A.M. I move my seat to make sure my leg comfortably will move from petal to petal with my knee brace on. I hit preset station number five, The Preston and Steve Morning Show, and I pull out of my drive way for my 11 minute commute to work.
It’s 6:35 A.M. I walk into my building and head straight to my office. I can’t clock in until 6:45 A.M., but I need to be able to sit before my staff start arriving at 6:50 A.M. I log in to my computer, check my email and grab the weeks schedule all while standing – don’t want to trick my body into thinking it’s getting a break. I change the assignment sheet as needed and check the toiletry supply in my office – still standing. I can finally clock in and sit down for at least 5 minutes.
My staff start trickling in. They need wipes, pull ups and laundry detergent. My right leg follows the rest of my body around the building for 6,000 steps simply because it has no other choice. The pain is numbing and I feel like I am falling apart at the seams. I won’t sit down again until the last of my ladies gets on the bus around 9:30 A.M.
The next three hours is paper-pushing and computer work. I find solace for my body. Reenergized for the second half of my day, I barely make it to 3:00 P.M. I clock out, and go home.
As soon as I can get the dog back inside I’m laying down on the couch. Before I can even get a pillow under my knees I’m asleep. The next sound I hear is my husband walking through the door at 6:00 P.M. I’m groggy and I’ve lost 2.5 hours, but my body needed the rest. My physical therapist tells me that until I’m strong enough my body is using twice as much energy to do everything. It is in this moment that I believe him.
My husband makes dinner because he’s a saint. Maybe I’ll have the energy to do it tomorrow. Who knows?
It’s 8:00pm. I tell my husband that I’m going to take a shower. He says, “Goodnight!” because he knows that it’s my way of telling him I’m exhausted and I won’t be back downstairs. I climb Everest and take a quick shower – too long in there and I’ll feel like I’m becoming a puddle. I slide into pajamas and settle into my jersey cotton sheets. It’s a relief on every joint. Euphoric enough that I’m not even thinking about doing it all over again the next day.
Emily is a 28 year old living with multiple systemic health conditions. She also works as a supervisor in a residence serving children and adults with intellectual/developmental disability, medical fragility, and behavioral complications.
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