The Ups & Downs of Chronic Illness
I've been holding it all together for a long time. But I'm done. I'm exhausted, I'm hurting, and I want to live. Chronic illness has taken its toll on my body, my relationships, and my life. And yet, I'm still here. I’m fighting to remain here. Soon I will publish a book - my story of how chronic illness has changed me and how I've learned to live with it.
There have been many lessons along my journey. One thing I thought I learned and am forced again now to remind myself of is to be calm and flexible with the highs and lows, ups and downs, and triumphs and defeats that a life with chronic illness can bring. My father used to tell me long before they diagnosed me, “don’t get too high or too low.”
As a disabled or sick person, especially if you suffer from hypermobile Ehlers Danlos syndrome (hEDS), you can feel you're improving, climbing upward against the mountain if only for a moment. Then the next day, you may find one overexertion can knock you back down. Or one successful surgery to stabilize your hypermobile joints can lead to more hypermobile joints in the adjacent areas.
I learned this week that I need another cervical spine specialty neurosurgery to stabilize my C3-4 and C5-6 facets in my neck. They are compressing my spinal cord and causing neurological issues again. Just as I was climbing my way out of a recovery from the last surgery and hopefully on my way back up. Oh, the highs and lows. This is the preverbal pushing a boulder uphill saga. As soon as we struggle to reach the top, we often find ourselves rolling down again thinking “thank you adversity for yet another.” Does this cycle ever end?
This is the root in the story of Sisyphus in Greek mythology. According to Wikipedia, “Sisyphus was the founder and king of Ephyra (now known as Corinth). Zeus punished him for cheating death twice by forcing him to roll an immense boulder up a hill only for it to roll down every time it neared the top, repeating this action for eternity. Through the influence on modern culture, tasks that are both labourious and futile are therefore described as Sisyphean.”
That is why the cover of my new book features a woman who is chronically pushing a boulder uphill. I really identify with this concept and believe others do too.
Chronic illness is a difficult struggle for patients, and even more so for their families and friends who are unable to understand the deep feelings of frustration, worry, sadness, and pain that these conditions bring. Being a patient is hard. Being the caregiver trying to understand the terminology, treatments, and struggles involved in chronic illness is even harder. I feel for all the loved ones.
I have dedicated myself to being hopeful and having a mindset that sets me up for success as best that I can. But sometimes, it gets old. So today, again, I brush myself off, shake off the blues, and keep getting back up to push forward. Of course, I am grateful to the rare EDS medical providers who can help and my supportive spouse who never fails to have my back- as we push this boulder uphill in tandem.
The patient perspective book provides a simple, understandable (and non-medical jargon filled) way to learn about dealing and healing with EDS and many emotional aspects of chronic illness. Whether you want information on what it means when you are diagnosed with Ehlers Danlos Syndrome or know someone who has been told they have this diagnosis, this book will be an informative source of truth that can help you heal not only physically, but emotionally.
Yet I push forward to get this book out in the coming days, with my wrist subluxing as I type, and my mind and spirit feeling weary. I have to get across the top of this mountain! I hope my book's collection of hard-earned lessons will offer solutions to patients who have previously been dismissed or disbelieved. All of you rare and special zebras out there - the people with EDS, POTS and joint instability - I offer you hope with a little push, a word of encouragement, inspiration or a simple reminder that what goes down, must also go up.