Understanding Invisible Injuries: A Personal Journey

The Struggles of Living with Post-Concussion Syndrome

What would you do if you found yourself in a small boat, tossed by rough ocean waves, unable to get off? This metaphor captures the essence of my experience with a concussion that evolved into Post-Concussion Syndrome (PCS). I also faced challenges like post-traumatic eye syndrome, a midline shift, and whiplash. These injuries led to vestibular issues, memory problems, fatigue, and vision difficulties.

When I first fell, I felt as if I were on that boat for weeks. It was impossible to function as my senses were overwhelmed. The dizziness was unlike anything I had experienced before. It felt like I was being sucked down a hole at high speed, leading to nausea. Even lifting my head triggered this sensation again. I later discovered that I had left ear vertigo, which complicated my balance issues. The concussion exacerbated my pre-existing balance problems and introduced a constant ringing in my ears known as tinnitus. This relentless noise drives me to distraction, especially after I push myself too hard.

Recognizing Triggers and Managing Energy Levels

Over time, I learned to identify my triggers and understand my energy limits. I realized that I should never dip below a 30% energy level. Going below this threshold often led to frustration, which would spiral into anger directed at myself. I became my own worst critic, and I learned to recognize when that critical voice would strike. For the most part, I have managed to gain control over it.

Whenever I overexerted myself, I experienced pressure on my forehead. This was a mere fraction of what I used to accomplish before my injury. Concentrating on tasks became incredibly challenging. I struggled to comprehend why light and sound felt like an assault on my senses, making everyday activities feel insurmountable.

Emotionally and physically, I was a wreck. As the weeks passed without any guidance on how to seek help, I fell into a dark place. I felt the need to retreat and protect myself from being overwhelmed.

Naming the Pressure: The Claw

It was during this time that I named the pressure on my forehead "the claw." This vice-like grip screamed for me to take a break and rest. However, it would come on so suddenly and intensely that I often found myself shut down for far too long.

Bright sunlight became unbearable, and music—something my husband loved—was no longer enjoyable for me. To accommodate my new sensitivities, we made changes in our household. I felt guilty about this, but we bought him headphones, which made him happy.

We also hung sheer curtains in our gazebo to soften the harsh summer sunlight. This adjustment allowed me to sit in my favorite corner, dreaming of the day I could return to the beach. The glare and movement of the water were impossible for me to handle.

Finding Joy in Family Moments

I am currently visiting my daughter in Edmonton, spending precious time with her, her husband, and my grandsons. They remind me to celebrate life and cherish the moments we can share together. I am grateful for these experiences.

When dealing with an invisible injury, it is essential to focus on what we can do rather than what we cannot. This was a difficult lesson for me. I had always prided myself on being able to do anything I wanted. Feeling limited triggered deep-seated emotions related to inadequacy from my childhood. My occupational therapist explained that when the brain is injured, it struggles to differentiate between past and present, making childhood pains feel real again.

The Path to Recovery

There is so much to say about this invisible injury, but it’s crucial not to lose hope. Recovery is a gradual process, and every small victory counts. Each head injury is unique, and my age (58 at the time of my fall) and health complications made my recovery more challenging. Additionally, I faced the difficulty of not knowing where to seek help when I needed it most.

After being hospitalized for ten days, I was sent home with a referral to physiotherapy but left largely on my own. It took four months before I found a concussion clinic and a doctor who could help me. It is vital to receive treatment within a specific timeframe, often referred to as the "window of vulnerability." While many recover within days or weeks, 15-25% of individuals are left with PCS.

That is why I am passionate about sharing what I have learned. My memoir includes numerous resources, and I will continue to add more as I discover them. Over the years, I have come across wonderful organizations and groups that support individuals with brain injuries. You can find more information on my site, where I have listed additional resources.

Tell your loved ones that you care about them. Take care of yourself and each other.

Conclusion

Living with an invisible injury can be daunting. However, understanding your condition and seeking support can pave the way for recovery. Remember, you are not alone in this journey. Embrace the small victories and cherish the moments of joy amidst the challenges.