Ehlers-Trauma Syndrome

3:13 a.m.

Awake

Salty water all day. Salty water before bed. Then I have no problems with hydration. I wake up to pee twice before morning. I fall back asleep immediately. 

3:13 is too early. I always make it until 4:00 a.m. I put my head back on my pillow. F*ck! My neck really hurts.

What have I done?

In my old life, my disabled life, my tailbone would shift. I would get explosive headaches with severe dizziness. I would run screaming for my morphine. Pain that you could kill yourself over.

In my un-disabled life this phenomenon is a shadow of what it was. It rarely happens. I want it to stop happening forever. (See articles How to diagnose cervicogenic dizziness and Chronic Neck Pain: Making the Connection Between Capsular Ligament Laxity and Cervical Instability.)

So I have been letting with my physical therapist, who I have come to trust, work on my neck more and more. I tell him, “More gently. Pull less. Press less.” He swears he is hardly doing anything.

He has me lie on my side and we do an isometric to get better muscle engagement around my tailbone. This is going to be a problem, I think to myself. 

Later at work I had shooting tailbone spams. I smile, hiding the massive grimace of pain. “A little back spasm,” I confess to someone who has seen my strain.

I remind myself. This is not my old life. Don’t panic. It will pass. I crouch down, pretending I need something in a low cabinet. Getting into a deep squat takes the pressure off my tailbone. 

But this time, no explosive-dizzy-brain-fuzzy-headache. Looks like my PT accomplished something. Wow, no dizziness at all. I am shocked.

It’s 5 minutes from the start of the first spasm until it is all has stopped. Soon my brain, pushed by such intense pain, is pumping out its own endorphins and I feel relief, thanks to naltrexone, a drug that rehabilitates the internal opiate system. 

My PT maintains his poker face when I tell him how much pain his work has caused me. I see his suppressed flinch. He’s nervously clicking his ballpoint pen. I take it out of his hand. I put it down on the clipboard. At other times, I have seen another look flash by, a look of love. He has real feelings for me. 

I try to make him feel better.

I tell him that this is my life. That no one ever understands how strangely sensitive I am to force and touch. How protective my body gets of itself. I tell him how I did most of my early physical rehab myself, simple exercises with my own equipment at home, rather than drag somebody into my world of pain. Why have to explain any of it, when it is so draining to try.

No response. But I know he has heard me.

My Old Life

Many, many years ago, before any C shots, I could hardly lie down at all for the pressure of my own body weight on my very flexible spine.

My old life. Back then, awake at night, I would try to manage on my own, until, so sleep deprived and so tortured awake with pain, I wanted to jump out the window. Then I would wake Mr. Pennington up. He would listen to my hysteria. Wait with me for more drugs to kick in. Fantasize about a better life. Imagine everything I would do. The only relief a prisoner has is dreams. And we would go to bed, finally. I would wake up alone, shattered, with my morphine hangover, push my feelings of injustice away.

There came a time when Dr. Plance was giving me C shots sporadically, and I became able to sleep. I started sleeping and sleeping, 11 hours sometimes, although I never felt rested. That went on for a year or so. “Maybe you’re making better sleep hormones now,” Dr. Plance wondered. That was with C shots only now and then. Mr. Pennington got over his deprivation and got to work on his career.

Taking naltrexone before bed made me an even better sleeper, the sort of person that falls asleep in 2 seconds. That is the greatest drug that no one is using.

3:13 a.m.

Awake

I queue up my iPhone. I play books on a low-volume. The sound of voices is comforting. I hate being alone in the dark. The best are the most boring, droning readers. Or the podcast Sleep With Me.

I place my body on its back. I lay my head on my flat Tempur-Pedic pillow, the bottom is under the tops of my shoulders, like I learned in the Gokhale book. This is how I start sleeping every night. I usually don’t move for hours. I get the most out of those hours of very deep sleep.

F*ck! Neck hurts too much. 

I re-arrange to try side-sleeping.

I find my soft down pillow, wrapped in my silk Slip Pillowcase, fitting for a delicate princess. I put it under my head.

I move my flat Tempur-Pedic pillow to under my rib cage. This takes pressure off my shoulder. My rib cage is very narrow. Without something under my waist, my spine is forced into a side crunch. Ouch.

I find my big, bouncy polyester pillow and put it between my knees. I am so knock-kneed, this takes stress off my hips and low back during the night.

Neck still throbbing. No sleep. F*ck!

 3:43 a.m.

Time to give up

Alone in the dark I walk by the living room, into my kitchen, as so many times before. 

This is a hard time to endure. The horror show of my life flashes before my eyes. 

In frantic, shaking Vicodin withdrawal I reorganized all the drawers. Then post acute opiate withdrawal wouldn’t end. I wanted to move because the memories were so bad. I came to hate being here. I did not think I could ever be comfortable here again.

I put on my soft Lands’ End turtleneck. I strap myself in my compression ice pack for my low back. I tuck my cold wrap ice pack into the turtleneck over my shoulders. I tuck a small one around the back of my neck. I ❤️ ice.

I have a bottle of Vicodin. Now called Norco. But it just isn’t enough. So I don’t bother.

I have tried CBD oil. I felt nothing except a little stoned. Not sure if the product was impotent or I don’t metabolize it well. It was so expensive and the taste so revolting. Yuck.

Should I make a coffee and start the day? A little too early. I have to work and won’t make it through the afternoon unless I get a more sleep.

4:00 a.m.

Alone

Seems like French rose: La Ferme Julien. I pour myself a glass from handicapped accessible, screw top Trader Joe’s bottle.

I put on my blue blocking glasses, $10 on Amazon. Tres chic. They do help my brain figure out sleep.

I watch Selling Sunset, which my friend recommended for its shallowness. Good choice for my early morning party. Those ladies looks so plastic. Their hair doesn’t move which is weird because it’s long. It’s like way too flat. There’s a desperation in making yourself look like something else. Desperation is never attractive.

No matter how much I prime, stipple and powder, makeup slides of my smooth EDS skin. I won’t cover my gray hair because I don’t want to strain my neck. So a natural, slightly messy look, I think is best.

I think about my old life. How many nights I spent awake with pain. I think about the rage I have over my life of torture. Rage at who?

I eat candy. I was passionate about Peanut M&M’S. Now it is Dark Chocolate Covered Caramels.

I make some ginger tea. I stand around the kitchen. Finally, I feel relaxed and tired.

I go to my bathroom, which I do not share with Mr. Pennington. It is my own little church. I have a drawer full of face creams and serums I layer on every night. My beauté regime is very Korean.

A small crystal chandelier hangs. Every inch of wall is covered in ornate framed pictures: My favorite singers Lena Horne, Beverly Sills and Maria Callas all in their Blackglama mink ads. Payment for the ad was a Blackglama mink. Getting asked to pose was proof you have made it. (See the Blackglama archive here.) I have framed postcards from Paris and framed drawings of dresses I cut from the Dior magazine.

I brush my teeth, I get back in bed. Mr. Pennington stirs. I tell him I’ve been up.

I queue up my iPhone and put in my headphones. I pull my shade over my eyes. I am very sensitive to the morning light. I fall asleep in seconds.

I know it is morning when I reach over for Mr. Pennington and feel that he is gone. I coax myself back to sleep. I dream about work. The night is over. I got a good amount of sleep. My neck is still throbbing. I hate it so much.

I pack myself in ice. I make a cappuccino. I make cold brew to heat up in the morning. Then I can indulge in my favorite drug without it bothering my stomach.

I think about my old life. I think it was not worth living. I think I am not sure why I didn’t kill myself. I cannot believe how much better I got. I feel angry and sorrowful.

I text Mr. Pennington, so he knows I have survived.

I sit down to write this. I hate writing in the present tense. I hate reading writing in the present tense. Present-pathetic tense.

I don’t want to be alone. My neck is killing me. The heat from the shower will help. Another round of ice before I go to work.

I wonder if my secret crush will be in today. He and I never speak. We only exchange looks. No one knows. Does he? When the other ladies and I have lust-fests, I never bring him up. The gossip might get back to him. If there ever is a nuclear holocaust and I am stuck at work and will never see Mr. Pennington again, I will make my move.