I didn't know what was wrong with me when I walked out of the hospital that last day, I only knew that my brain was slipping away and my ability to critically think, and important attribute of a registered nurse, was being held hostage by the unbearable pain and extreme fatigue. Insomnia and sleep deprivation reached the boiling point; putting the patients I so loved to care for at potential risk. I am grateful that I made the decision to exit stage left before anyone was injured, as emotionally painful as that decision was.
I had cut my work hours back to part time in the mid to late 90’s, and even before that I stepped away from the bedside by becoming an educator, but you see even that did not help with the pain and dysfunction. I had suffered several on the job injuries, part of the job description, and with each surgery, it became more difficult to recover. I spend those last 5 years or so juggling life so I could maintain health benefits for myself and my husband.
After I threw in the towel, not knowing at the time why, I was eventually diagnosed with fibromyalgia (FM) then two years later, chronic fatigue syndrome (CFID/ME). I then learned on my own that I had chronic pain from myofascial trigger points, even though I had injections previously for this, I did not understand what this all really meant, after all, my experience was as a hospital nurse.
I had experienced poor healing, sleep disruption, irritable bowel syndrome, migraine headaches, Raynaud’s disease, irritable bladder, osteopenia, gastric emptying delay, pyelonephritis, mononeucliosis, erosive gastritis, duodenal ulcer, osteoarthritis, chronic meralgia paresthetica, periformis syndrome, thoracic outlet syndrome, degenerative disc disease, shingles, joint hypermobility, levido reticularis, SICCA syndrome, several shoulder surgeries, knee surgery, a hysterectomy, several sinus surgeries, carpal tunnel, a rectocele repair and a hemorrhoidectomy. All of these gigantic puzzle pieces where in the box, but no one seemed interested in seeing the big picture. Finally, of all people a rheumatologist referred me to a neurologist that knew what it all meant. FIBROMYALGIA. Later I saw a different rheumatologist that diagnosed the chronic fatigue syndrome, but I am still not sure to this day, what criteria he used to make the diagnosis. Later I experienced irits of both eyes, (thought by the eye doctor to be related to some autoimmune disease, not yet diagnosed), and I found out after much insistence that I have Hashimoto’s Thyroiditis (an autoimmune disorder of the thyroid).
Dealing with any one of these issues by themselves is enough, but throw them into one existing person, me, became difficult to deal with, and it’s not over yet, but I keep hacking away one at a time.
After leaving work, I dealt with a great deal of depression, as I was used to being able to conquer anything thrown my way, until now. I was blessed to have crossed paths in life with my once therapist and now co-author, Jeff Miller, PhD. He offered many tools to help me deal with disability. I hated that word, but learned that though it is an obstacle, it does not define who I am as a person. I started journaling as a way of working through the grieving process, and boy was this ever one. The book started as an entry in my journal, and blossomed from there. Please read my blog on “Never Giving Up.” Determination is the mother of invention, I don’t remember who said that, but it is so true. I was, and continue to be determined not to let my illnesses destroy my ability to enjoy life’s pleasures. For me, I had to redefine what that was.
Redefining our life’s goals isn’t always easy, especially in the face of pain and fatigue, but I choose to look at the contributions of others who accomplished much. Vincent Van Gogh suffered horrible pain with migraines, yet he is one of the greatest artists that ever lived. Christopher Reeve overcame what some would say were insurmountable obstacles, but he did. He often said he found himself after his accident, a profound statement that I agree with. I had a choice, see the glass as half empty or half full. Choosing the later has altered the course of my being.
Though I may never reach that bucket of gold, total physical, mental, emotional, and spiritual balance, at the end of that rainbow, I am learning it is about the trolley ride over it, absorbing all I see as I reach the pinnacle.
My greatest desire is that when I am gone, people will say…. “She never gave in, she trusted God, she maintained forward momentum, and she always strived to pay it forward.”
Lamb hugs to all, and to all a good day.
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