This last day of “NERVEmber ® and Art Every Day Month (AEDM) is about adaptability, solutions, and coping targeted at post-survival Thriving with arachnoiditis and its numerous consequential conditions.

The Arachnoiditis Apocalypse is accompanied by MANY lessons that are as diverse as the people living with it. My life was permanently altered in many ways. It took time to grieve what was gone and to realize, “altered” is not the same as destroyed.

Much of the content I post is designed to offer search terms you may not have considered and to let you know what has or has NOT worked for me. What I share is based on my own experience and is NOT ever intended as medical advice or treatment for you. Always be sure to consult your trusted practitioners prior to making any changes to your treatment plan. 

The Bullet Points ~(This is NOT a to do list.)

• Own your Wellness.
• Go Gently and Listen to Your Body.
• Celebrate Little Things. Grace lives in them.
• Know your triggers. Navigate your pain.
• (For Adhesive Arachnoiditis) Assess the impact of any obstruction to natural cerebrospinal flow. Find out which positions mitigate the blockage to restore as much optimum flow as safely as possible. (Whether it is a leak or a blockage, frequent spinal or positional headaches may be an indicator of a disruption of the natural flow of spinal fluid.)
• Pace yourself, but KEEP moving.
• Get Creative – The Creative Process Heals
• Be Mindful. Intentional use of time minimizes the perception of lost time.
• Be Informed. Not obsessed.
• “Escape” in moderation.
• Connect with Others. Solitude is Beneficial. Isolation is Lonely. Loneliness is destructive. Healthy connections create harmony in mind, body, and spirit.
• Communicate with Caregivers ~ How to Help An Arachnoiditis Survivor
• Work with a trusted practitioner to document your progress and learn which treatment and support are right for you.

DETAILS 

Adaptability is the foundation for Thriving with Arachnoiditis.

The significance of Cerebrospinal Fluid Flow Rotation was the key that unlocked the mystery of how I could re-learn to live my life. In my case, this obstruction at multiple spinal levels IS, and will always be, the origin of much of my neurological dysfunction. It became such a big part of pain navigation that a pervasive awareness of it underlies everything I am doing now. Sometimes, quietly tracking my remaining minutes, I am conscious of it running out like the sand in the hour glass shown in the art journal doodle above.

Though at first I didn’t know how to differentiate these factors from the others, I did learn. For me, maximum vertical time was approximately two and a half hours before symptoms of CSF entrapment/blockage would begin to impair my ability to function. However, IF I made sure to get horizontal every two hours, even when I was feeling okay-enough in the moment, eventually I had the power to minimize the impact of those symptoms. As is common for arachnoiditis survivors, invasive procedures are contra-indicated in my care. This obstructive scar tissue cannot be removed. (These symptoms have some similarities to those of a CSF leak. The difference is there is NOT a leak. The fluid is still in there trapped in the wrong place in the spinal canal. It puts pressure in those places while the brain is essentially deprived of an adequate amount.)

Eight years into Arachnoiditis Survival, I developed Complex Regional Pain Syndrome (CRPS). Though I wouldn’t wish it on anyone, my biggest lesson came in learning more about how to manage it. As I changed my habits to reduce inflammation, I inadvertently discovered that, over time, I was reducing the swelling in my spinal cord. Eventually, there was more room for the spinal fluid to flow around the scar tissue. In 2019, twelve years after leaving the workforce due to unemployability, I was able to return to working in the local community. From 2019 to 2023, I continued practicing all that I had learned to navigate and adapt to this injury.

A year ago today, I fell down some icy stairs and broke a bone in my back. Ordinarily this should have taken about twelve weeks to heal. It didn’t. Complicated by what was most-likely a bone marrow infection and the discovery of an undetected compression fracture at a different spinal level resulting in a new impact-trauma-induced arachnoiditis flare, 2024 has been a very long year.

So, this NERVEmber, now that I finally have all the details about what I am dealing with this time, I am revisiting all of the lessons I learned along the way to this moment.

Knowledge is power.

Still Waters Run Deep, but MOVEMENT allows Flow.

Mindful Time Management Matters.

(This post was made possible by patrons like you. Thank you!)