Friday, 14 September 2018

GUEST POST By Alyssa for Chronic Pain and Chiari Awareness Month 2018

“A smile is just a mask that can cover up the true reality of pain we are facing”
The month of September is Chronic Pain Awareness Month. The reality of life with chronic pain is the “masked smile life” as we want the world to see the “normal me”. Well the world needs to see the true reality of what it looks like living with chronic pain.
Living life with chronic pain is basically living a nightmare that you never wake up from. The pain is there from you from the time you wake up till the time you go to bed and you hope sleeping will help ease the pain. Pain takes away so much of our life and changes us to the point we grieve “the normal life” because living with chronic pain is pure exhaustion from the never ending doctors appointments, therapy sessions, taking medications, tears, ER trips, countless test/procedures, surgeries etc.
When people ask us how we are doing our answer is usually “okay” as we don’t want to get into explain the raw truth because most people won’t understand. In reality we wish we could just openly share and not be called dramatic, attention seekers, or be told your just imagining it etc.
Chronic pain affects us emotionally, physically or even mentally. We really need more awareness because not all chronic pain is visible. It’s sad that chronic pain is poorly understood and poorly treated. 

I am fighting multiple illness that cause daily chronic pain that’s not visible. I look health on the outside but in reality I am fighting a war against my own body. EDS (Ehlers-Danlos Syndrome) causes me to have wide spread joint pain due to dislocating multiple joints a day. POTS (Postural Orthostatic Tachycardia Syndrome) causes me to have pain in my chest due to the tachycardia (fast heart rate). Chiari, Cranial Settling and CCI (Craniocervical iInstability) has caused me to need a fusion to help brain and brainstem compression. 

Chronic pain will not define me because I am defined by my HOPE in the LORD! He is the one who gives me the strength to keep fighting when I feel like giving up! 
“Strong is faithfully fighting... it’s honestly hard but God is my rock through the suffering! I know he has a purpose for my life despite the challenge of fighting everyday and I am holding onto the promises of hope that beauty can come from pain”
My fusion scar
Smiling through the pain