By May this year (2021), I found myself feeling a heaviness inside, and no matter what I tried, I felt trapped, and I could not free myself.
My self esteem was so low, I lost the will and drive to standup and fight. I felt as though I was losing my voice. I felt like PD had defeated me, and I no longer had the energy to be a warrior. I had that familiar feeling of merely existing.
As I went through the motions of the knee replacement surgery, hoping that this would be the lightbulb moment—something, anything, to bring me back. The operation was a success and the pain experienced before was gone.
Hey, this should be great?
Unfortunately, it was short-lived.
Then came more; my uninvited guest decided that this was too easy.
The dystonia became unbearable, causing excruciating pain. My muscles would not stop moving, and the cramping was the worst that I've ever experienced.
What did become apparent was that the disease had progressed a lot further than I had thought. It crossed over to the right side, the tremor on my leg was worse, and I discovered that I had restless leg syndrome. This set me back even more.
I began focusing on the what-ifs and what happens when?
All the W's.
I felt as though my life was moving along the waves of an ocean, and PD was the tide.
I felt DEFEATED - I couldn't keep my world that was crumbling around me, together.
ASHAMED - For wanting to give up
VULNERABLE - for showing the world that I'm breakable also
I am sure that any person living with a chronic illness will agree with me. Every step back feels like you're losing a large part of yourself and it hurts because it takes so much courage and effort to reach there in the first place.
I could no longer endure this pain, feeling lonely and misunderstood. I know that everyone around me was trying, their best to be helpful, (I do appreciate all my loved ones, family and friends and their love and support makes my journey so much easier).
However, at the time I felt no one could take this pain and away, no medication, no pep talk, and no advice. No one could stand in the arena with me and say, I know exactly how you feel. All I wanted was someone to hold my hand or give me a hug, listen and allow me to vent and cry. So I shut down.
As I sunk lower and still lower right to the bottom, medication helped numb the physical pain and made me sleepy and tired so that I slept through the emotional hurt.
I was still searching but couldn't find the strength to pick myself up. I began dissociating from almost everyone because even communicating with others felt like a mission. My tolerance to the pain weakened with every episode of dystonia, was followed by fatigue. I felt judged, and I could no longer mask how I felt; I didn't have anymore to give.
Unfortunately, my girls had to also witness this downward spiral. As a mum, this made me feel worse. I wanted to protect them, but didn't know where to begin.
At rock bottom, all the meditation attempts, even the motivational talks and affirmations, just flew right over my head. It felt like my brain decided that the knee replacement didn't belong and convinced my body to reject it.
The visit to the neurologist made me feel like I was Dorothy flying around and around in the tornado with no way out. Here I was listening, to him tell me that my YOPD was progressing too quickly, and we have to take a bold step to stop this; we have to change all the PD medication because if this continues, we're no longer looking at our 20-year plan; basically, it's more like ten years. I have to start considering the DBS surgery ( deep Brain Stimulation).
As I walked out of his office, I felt broken, shocked and my uninvited guest was receiving a yelling using every censored word that I had ever come across in my entire life.
I was numb, and all that I could think of was the change of medication again. That horrible feeling of no control. The extreme highs and lows. I can't go through that; I can't put my family through this again.
No crying; I had no more tears to shed. I didn't sleep through that night.
How was I to do this?
Should I give up all hope?
How do I tell my girls?
Will we be able to get through this?