My Life with Chronic Illness Part I

This will be the first in a series of posts about my life with dysautonomia. I’m a private person by nature and it’s something I’ve been reluctant to speak about until recently. Currently I’m working on a book (alongside a new novel) chronicling my twenty-five year struggle with the slow decline of my health, the difficulty I had in obtaining a diagnosis, the heartbreaking discovery that my daughter also has it, and the lifestyle I’ve developed to better cope with the symptoms and physical limitations caused by it. This first post sort of begins in the middle, but it explains how this all relates to my writing.

What is dysautonomia?

Dysautonomia is a broad-brush term for a array of chronic symptoms caused by an improperly functioning autonomic nervous system. It can affect heart rate/rhythm, blood pressure, digestion and other non-voluntary body functions. Symptoms of dysautonomia vary from person to person and can run the gamut from mild to life threatening. The cause is still unknown.

In the summer of 2014 I wrote my first novel, After and Again. A life of being an athlete, an adventurer, and an outdoorsman had ended. I was mostly bedridden. I weighed 118 pounds. It was believed by my doctor, my family, and myself, that I was on my way out. I had a body mass index of 15. I required assistance and a wheelchair to get to the bathroom and had to use a stool in the shower. If I stood up, my blood pressure and heart rate would both drop to the point where I lost consciousness. My long term prognosis was simply stated as “poor.” I was depressed and losing hope. I woke up every morning just wanting to stay alive long enough to finish the book.

Prior to this I had endured ten years of severely declining health, fruitless consults with countless specialists, several misdiagnosis’s, half a dozen or more ambulance rides to the hospital—some leading to long term stays at UCSF and Stanford hospitals. I finally received a diagnosis of autonomic dysfunction (dysautonomia).  I had also been diagnosed with ulcerative colitis.

They removed my colon in March of 2014 . My doctors still have conflicting opinions on whether or not these two illnesses were related. The popular belief among the medical community is no. My GP and I are both dubious. I only know I had symptoms of dysautonomia more than a decade before I noticed the first symptoms of ulcerative colitis. Ultimately the two together, whether related or not, nearly killed me…which is one of the reasons I’ve chosen to talk about this. Because if it weren’t for being so sick and knowing that my days may be counted in months or weeks, I might never have written that first novel I’d talked about since I was in grade school. Essentially, I owe realizing a lifelong dream to my illness.

I slowly improved after my colon was removed and the ulcerative colitis was eliminated from the equation. I still spent most of the following two years (and another completed novel) in bed, and an additional year mostly in an easy chair facing the window and my fruit trees. I still suffered (as I do now) from bouts of low blood pressure, low heart rate, orthostatic hypotension, heart rhythm issues, fatigue and digestive problems, but I’m alive, and I’ve learned tricks to mitigate some of the symptoms. I’ve carved out a life for myself, and I can even enjoy the mountains again. I’d like to boast about how strong I am, and how I’ve overcome a little understood illness, but that wouldn’t be true. It’s a simple case of “get busy living, or get busy dying.” Thanks for that one, Stephen. It’s always been an inspiration to me.

 

—Michael

 

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Comments

  1. Mischenko

    Michael, I had no idea you were struggling with health issues like this. I’m very happy you are doing better though! I’ve read about dysautomnia in the past when I started dealing with regular heart palpitations and dizziness. I honestly didn’t know that there were different degrees of it. It seems like a very confusing disease. Thinking of you and good luck with your health journey, friend.

    1. michaelamclellan Post
      Author
      michaelamclellan

      Thanks for the good words, Jenn. I appreciate it. This is a subject I’ve been reluctant to talk very much about. Moving forward, I’m hoping that by sharing my experiences with it, I can possibly help others who are just beginning to navigate these waters. Getting a proper diagnosis seems to be the biggest hurdle for people suffering from autonomic disorders. There are tests available now that can aid in a proper diagnosis. Unfortunately, not all doctors are well educated in this poorly understood family of disorders.
      On a side note; I hope you have discovered the cause of your heart palpitations and dizziness.

      Best wishes always,
      Michael

  2. Susan (Susan's Reviews on Goodreads)

    Sorry to hear about your and your daughter’s diagnosis and health struggles. I look forward to reading your blog, and wish you much success in completing and publishing your work. I totally empathize with your desire to live your life privately, but I can see that writing about and sharing your problems will be a coping mechanism that will eventually help others who are suffering from this life-altering condition. Stay hopeful, and well.

    1. michaelamclellan Post
      Author
      michaelamclellan

      Thank you, Susan. It’s been a long road. You’re right, finally talking about it has been therapeutic in a sense, and if anyone else can benefit from reading about my experiences then it was well worth writing down.

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