What everyone needs to know about chronic pain | Awareness #EDS #CRPS

Having Chronic Pain Means I’m a Warrior – Even If My Battle Wounds Aren’t Visible

By Lena Zerbinopoulos | The Mighty
“I write about Ehlers-Danlos Syndrome”

 

It’s 2 a.m. and everyone else in my house is sound asleep. The pain from Ehlers-Danlos syndrome has jolted me from a nightmare where I was Arya Stark and “Needle” wasn’t quick enough, nor was my protector, “The Hound,” from a random jab from a faceless backstabber.

The stab was in the exact spot where most of my pain has taken over my back. Asleep, my mind conjured up fantasies and jumbled up the last episode of Game of Thrones I had watched hours ago to incorporate the justification of pain waking me up. Dazed, I quickly looked around for “Needle” as to defend myself before I realized I was neither Arya Stark nor anywhere close to Winterfell. The only remnant of that brutal nightmare was the pain stuck under my shoulder blade, so deep I could vomit.

I feel immobilized by the pain and too exhausted to move, but I know it’s not going to allow me to sleep. I have to get up and find something to dull the pain and inflammation and promptly get me to get back to that bar. If I fall asleep quick enough I am sure I can reconnect with the coward who dare stab a ͏young girl just looking for a bite to eat.

I’ve done it plenty of times. After waking from a nightmare, I accidentally fall back asleep to resume my unwanted position. This time I wanted it. I wanted to feel like the pain wasn’t coming from my genetic disorder. I didn’t want it to come from anything but a bloodbath of a battle where I was fighting for my life – because that’s what it felt like. That’s exactly what it felt like as I stumbled down the stairs, angry I never seem to prepare a bedside, “lifesaving,” sleep-inducing concoction of Tylenol PM  and ibuprofen with a bottle of water. No, I ignorantly forget that step as my sleep-deprived body climbs into bed each night.

My “sleep-drunk” body finds its way to the bathroom downstairs. I’m careful not to make too much noise or even further recognize that I’m past the point of returning to seek my revenge or adding a new name to Arya’s long list of those who must die.

No. Now I’ve been up too long to be Arya Stark. Instead I crumble on the sofa, in a position I’m sure to regret in a few short hours. I try to will myself back to a place where pain actually makes sense to me. It makes absolute sense to feel like someone has stabbed you in the back when they have. However, it doesn’t ever seem to make sense that there are no gaping holes in my body accompanied by my pain. There is no blood gushing out to justify my disorderly walks and physical weakness.

I lay there on my sofa in a fetal-like position with no visible wounds but tears streaming down my face as I wait for the PM portion of my Tylenol to start working. I wish I had something stronger to dull the pain – but my pain management choice, that I regret each time I’m covered in tears, will work just enough to dull me back to sleep until I can figure out a better solution.

It’s that moment when I realize, although I don’t have gaping wounds, nor am I dripping with blood, my pain is as real as any warrior in the middle of a battle. It’s a battle I fight each day, without a sword, without a protector, without someone to validate that I am indeed in pain. Naysayers don’t doubt the pain from blood, but they do doubt it in the absence of it. In a few hours, I will wake up with the same pain and I will have to become a fighter all over again. I fight when I’m awake and it doesn’t stop while I sleep – my mind is just more creative then.

 

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