Living with the ‘Suicide Disease’
“As I laid there, I felt a complete lack of control. I buried my face into a pillow sobbing uncontrollably. I wanted to scream, “I am on fire!”
Curled up in the fetal position lying in my living room and gently rocking back-and-forth, I attempted to soothe myself as I once cradled my children many years ago. However, self soothing failed to provide me the comfort and relief I so desperately sought. Warm, salty tears blurred my vision and rushed down my face soaking my blonde hair and flooding my ears. As I laid there, I felt a complete lack of control. I buried my face into a pillow sobbing uncontrollably. I wanted to scream, “I am on fire!”
It started in my knee but slowly spread and has nearly consumed my entire body. Initially caused by a military training injury, it began to spread further after two workplace injuries. Significant delays in treatment caused by mismanagement and medical ignorance by some made things worse. Fortunately, I eventually found an amazing medical team and began a slow journey to control and even slowly reverse the effects. Sadly after making positive gains from a new and risky treatment, an accident caused by negligence brought a major setback. The progress I had made was reversed in an instant. I live in fear of any injuries regardless of how small they might be. I am now five years into treatment and again starting to make slow progress. But my body was still on fire.
“Desperately holding onto images and thoughts of my beautiful children, I reminded myself that I am a mother, wife, daughter, friend and a fighter.”
Stop, drop and roll…does not help as there is no physical fire. My skin looked like wax, is blotched and swollen and my muscles have atrophied. To those around me, I appear as though I am fine however I am anything but fine. I hide my pain and my skin behind long sleeve shirts and sunglasses not wanting anyone to see what is my reality. My veins feel as though my blood has been replaced with gasoline and then set on fire from the inside. I can’t sleep - I have run through all the coping mechanisms and tools I can think of all in the midst of a heavy brain fog. Box breathing, mindfulness, pain apps, journaling, yoga, meditation and medication all help slightly reduce my pain levels but only for a short time. I am terrified of medications as I’ve had my share of adverse reactions and I fear the risk of addiction.
I laid there in the fetal position praying it would all stop; my mind wandering to a dark place as all hope slipped away. Desperately holding onto images and thoughts of my beautiful children, I reminded myself that I am a mother, wife, daughter, friend and a fighter. I desperately grasped to that straw of connection as a reason to keep living.
Complex Regional Pain Syndrome
Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathy Disorder (RSD), is accepted as one of the most excruciating pain disorders. The McGill University Pain Index* rates CRPS at a staggering 42 out of 50 score on their pain scale.
The Suicide Disease
Laying on the soft silky carpet on my floor with my skin burning from the inside. I also battled allodynia; a feeling of pain from stimuli that doesn’t normally cause pain. The tears rolling down my face, gentle touch or the soft texture from my clothing feels like barbed wire being dragged across my skin. Even the slight movement of air from someone walking past feels like sandpaper on my face.
To someone who has never experienced CRPS, they may think, “Wow, what a rough night!” Now consider that CRPS/RSD doesn’t last a night, or a week or even a month. Rather it lasts a lifetime - every minute of every day - 24/7. This is why CRPS is referred to as ‘The Suicide Disease’. I lost my military career, my ability to work, run, play with my children and enjoy my family and friends. My dexterity and mobility eroded and at my worst I was reliant on crutches, a wheelchair and I required full personal care. I was unable to care for myself let alone my family. Yet I look fine to the outside world.
“CRPS/RSD doesn’t last a night, or a week or even a month. Rather it lasts a lifetime - every minute of every day - 24/7. This is why CRPS is referred to as ‘The Suicide Disease’.”
I once felt helpless. I felt this was the end of my life. How could I go on living with such pain on top of all my other medical challenges. I truly believed I could not continue. I didn’t want to continue. Yet I didn’t give up and I continued every day to show up to life. I forced myself to honour where I was on my journey. Finding an amazing and knowledgeable medical team was part of the key. I had to learn to except that it is ok to not be okay.
Just because someone looks fine doesn’t mean they are. As the old saying goes, don’t judge a book by its cover. I write this today as a reminder that we never know another’s journey. We may see glimpses showing how normal people are but what we don’t see is the reality behind closed doors especially for those living with such an invisible disease. We don’t see the unbearable suffering, the isolation, the depression, the loss of friends and the inability to do activities one once loved. Many, including myself, have learned to smile and show the world we are fine when we are anything but. This is easier and safer than sharing our unreal reality and trying to explain the unexplainable.
“... what we don’t see is the reality behind closed doors especially for those living with such an invisible disease.”
Please be kind to one another and check in on your loved ones. I have learned a new way of life through my invisible illnesses and although my journey through life is not as I envisioned, I feel it has evolved into a journey of true resilience, hope and courage. If you or someone you know are struggling with an invisible illness, please reach out. You are not alone and you can work towards better moments followed by better days. I am here to share my journey of strength and vulnerability in my constant efforts to live a purpose driven and empowered life.
Much love and empowerment,
Angel
*According to wikipedia the McGill Pain Questionnaire, also known as McGill Pain Index, is a scale of rating pain developed at McGill University by Melzack and Torgerson in 1971. It is a self-report questionnaire that allows individuals to give their doctor a good description of the quality and intensity of pain that they are experiencing.
