I just finished reading “Between two kingdoms” by Suleika Jaouad. While I can’t pretend I understand what it is like to live in the throes of cancer, this book resonated with me so deeply on a chronic illness level. Her struggle to acclimatize herself after she was in remission, captured my attention. This was where I realized I was struggling. Chronic illness unfortunately doesn’t have a remission button. And If it does, I have yet to find it. It leaves one standing alone, searching for the point of life where it all changed. Stuck in the abyss of before illness and after Illness. Mostly stuck in the before, not quite sure how to accept the new storyline that has been presented.
The before button
A button I have hit over and over again, and discovered it to be broken. It can’t be fixed or the batteries changed. It is beyond repair. I stand over and over staring at this word “before”. How it was, before. What I could do, before. How we were, before. Before before before. This button consumed me.
The now button
What have I become. How did I get here. Where do I go from here. How do I thrive in the now. It took 12 years to adjust to my life with pots, and now I struggle with an additional unknown diagnostic that has broken me down physically and emotionally. It has created a form of chronic illness ptsd. I am afraid to push myself. I am afraid to go to far away from my comfort zone or my house. I am afraid of triggering an episode or making my self feel worse. Every day is a delicate balance of getting myself upright, and when I do, I’m afraid of corrupting it. My fear has caused me to withdraw, and to say no, to not play, to not enjoy, and not fight. I battle my head. My head wins. Most of the time.
The change button
There comes a point where it’s no longer ok. I lost my career. I lost my sports teams. I lost my way. I lost my passions and drive. How do you find your way. How do You take the first step. How do You hit the change button. Illness impacts not only yourself but all those around you. The burden you create on others breaks you down emotionally. The example you make for others becomes a trail of anxiety. The need and desire for change occurs every time I make a list of how I want to change. And what I promise to do to change. But I gathered up scrap after scrap of promises and how to letters. The desire to change isn’t enough. You have to hit the button. You have to actually change. Stop the promises.
First step button
It might sound silly, but I bought a basketball net. I used to shoot hoops to relieve stress. I can’t run but I can stand still and shoot. Having your arms above your head with pots is not easy to do. It triggers my pots. But this allows me to build up my arm Strength while relieving stress. Stress for me is something that I have struggled to relieve. Pre pots I would hike or workout at the gym or take a boxing class and get out my frustrations. Without the ability to push myself and get my heart rate going, my stress has built and built to the point it had no where to go.
I also got an electric bike. I can now keep up with my kids. I don’t have to miss family outings on the bike. I can pedal when my tolerance allows, and coast when it doesn’t. I can build up my exercise tolerance without fear of getting to far away from the house or the car. My fears of never knowing when symptoms will and would hit, kept me from living and thriving. It kept me home and staying on the safe side. It kept my happiness at bay. I don’t have to worry with this bike.
Nect, I drove myself and kids to the cottage. Alone. No one else to rely on but my self. I am having to re learn how to build up faith in myself. I am having to relearn how to trust I’ll be ok. I am having to learn to take a chance. To do this, I am having to unravel years and years of chronic illness, ptsd m, and fears that have resulted from very real and scary hospital visits, or moments of pain and agony. It’s taking chances and finding my new life
It’s learning to knit. Picking up the needles and learning things stitch by stitch. Taking it one row and one day at a time. I may not see what it will become initially, but One day it will become something beautiful. Maybe not perfect. But it will be something i created because I tried.