But tonight, or rather middle of it, verging on morning……
I decided to document my chronic pain experience that I live with and sometimes blame my divorce on. I have a connective Tissue disorder called Ehlers Danlos Syndrome and my body is literally falling apart. The pain and fatigue are unrelenting. If I want to be the most comfortable it is spending a lot of time being sedentary and as a result often lonely.
So here goes….
First comes the soreness and the slightly broken feeling from doing something as simple as shopping for a few groceries.My joints trying so hard not to topple like dominos….sublux and dislocate. You prop your body against the checkout stand, toes turned inward, knees bent, and lower your back as if you are sitting with only the checkout counter for support while you wait your turn. Because by the time I reach here my body is starting it’s avalanche into days of recovery….
You’ve learned to tune out the surroundings and gaze at the peppermint patties, M&M’s and discounted My Little Ponies that tempt small children at their eye level.
Now it’s my turn to check out so I make small talk and joke with the cashier to feign the anxious feelings of needing to still make it to the car and load up your purchase and then drive with quivering legs, home. The journey seems large and insurmountable.
I manage to make it, completely exhausted. I take a few deep breaths and unload and put the groceries away. Then I collapse into the couch to regain some energy.
Every muscle starts to seize with revolt. Relaxing at this point sends your body into the beginning of a chain reaction. The beginning of an agonizing few days of recuperation.
I’ve never run a marathon, but imagine it’s much the same.
A delicate calculated balance between doing just enough so the pain doesn’t consume you. Sit to long, and moving is excruciating. Move to much, and the healing is prolonged.
Slow calculated movements to realign the sacrum. Micro adjustments. Long slow stretches, just enough as you linger and let that pain be relief, momentary release! You learn to manipulate your bones and tendons, ligaments and muscle, as if a chiropractor was putting you in alignment. You learn to read your body like Gray’s Anatomy.
Eventually you crash hard. Only to wake up an hour later, heart pounding and reflux pooling in your esophagus. Autonomic disfunction. I can feel and hear the blood pulsing through my veins. Pulsating in my cranium, whooshing in my ears. I feel inside, more than out. A chill travels up your spine and spreads out like an cool oil slick. Tentacle like sensations awash over your tender overly sensitive skin. I use to fear these episodes and send myself into a panic because you were told they were psychosomatic. Panic attacks. I’ve learned different. They are not….my autonomic system is haywire.
You feel like you just want to die. It seems safest. You become somewhat accustomed to it. After all it hasn’t killed you yet.
I learned to keep the episodes to myself because somehow you began to believe it too. You begin to expect it, and roll with it so to speak….no one understands unless they too suffer the same. You become recluse and stop doing even the ordinary because the price is to high to pay.
Every now and then I test the vessel I reside in, and take it for another ride. No expectation for a different outcome. But welcome to one. The alternative is loneliness. Sometimes you have to pay to play. You weigh the pros and cons and carefully plan each and every use of energy.
Today was not the day. No different than the last.
So now I lay here finding distraction to make it bearable. Because even though my body needs to rest. It simply can’t.
This is my new “normal”