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I, like many working people, especially working mothers can do what I call ‘struggle with the juggle’ of everyday stress, demands, to-do lists, and overbooked calendars. Then add on chronic illness and it can feel like an impossible life. How can we possibly keep all of the moving balls in play?
I dropped my juggling act in one moment when I passed out driving. For months, I thought I had fallen asleep whilst driving, later to learn it was from lack of blood flow to my brain, caused by PoTS, related to unknown underlying Ehlers-Danlos syndrome (EDS). At that moment, I lost my most important asset – my health. They say, “when you don’t have your health, you’ve got nothing.”
Right? It is true and all zebras know it. We can feel like we lost it all.
My new cardiologist soon told me after all the testing that I had PoTS/dysautonomia, sent me to a geneticist who diagnosed me with hypermobile EDS (hEDS). The cardiologist had also discovered a heart embolism and craniocervical instability. The diagnoses of dominoes came falling down and so did I. The doctor urged me to reduce stress to increase my quality of life, strongly urged me to dramatically alter our crazy lifestyle, find calm and peace, or I would not live to see my next birthday of 50 young years.
I spent the next few years learning to be able to climb: first to be able to climb the stairs in my home again, then climb out of my walker. I rose up, slowly, stronger. Researching voraciously how to heal myself anyway I could. With patience I never possessed before, I found the resilience and courage to choose to become the hero of my own life and learned how to heal, practice wellness becoming a ‘patient patient’ only to discover I could change and choose joy where I found purpose and fulfillment. I am rising up a new non-corporate ladder, to enabled, happier and more feelings of value and worth than ever before.
I am now certified to coach and mentor others on Life Purpose, Life Optimization, Happiness, Positive Psychology, Mindfulness, and QiGong Mindful Movement training. I am not a licensed therapist or healthcare provider, but a mentor, coach, and mostly a chronic illness fellow who serves as an accountability partner. I have turned tragedy into triumph. I have gone from exhausted to exuberant. I hope you fellow zebras can choose to make a change, courage to see it through to action, and live with purpose and the ends in mind. Life is short, make it what you want NOW. Live in the present and appreciate all of the abundances we still have. Life is about being present, not perfect.
My life’s lesson to share is to stop burnout, skip the breakdown, and jump quickly to breakthrough to live your best life possible. We have a fast-moving, short time here on this Earth. Make it count. We all get caught up in the mania, road rage, toxic bosses, and too many things on our calendar. Stress is proven to cause disease.
EDS is a very challenging life to live. But we do have hope. It’s time to realize it is under your own control to choose what your priorities are and work them into your life, on purpose. Unstoppable. Enabled life. Ward off more diseases. People need this, now more than ever. I believe we can get there and make a powerful, passionate, and purposeful impact. I have become the hero of my own life. I was opened up to a higher purpose, permitting the more authentic me to emerge, utilizing my inner strengths and personally driven to seek joy in living.
As Maslow’s hierarchy of needs theory suggests – I had climbed the ladder again from the foundational bottom to the top of self-actualization. Now, I am living a life with a sense I was given EDS and PoTS as a purpose to learn and share. I started my own wellness and life coaching business to work under my own terms, as I could and I now serve others – more than my limited self, my disabilities, and frustrating lack of former capabilities. I embrace who I am, how different I look, move, act, and need.
My Zebra friends, stay focused on living a joyful life each day and live it one day at a time.Tags: Ehlers-Danlos syndrome, management, Self-Advocacy, self-care, Support System
Categorized in: Stories