Behind my smiles, I was angry... Not at the disease. Nor at myself for being in denial about being sick for so long. Not at the medication for being unpleasant and possibly ineffective. I was angry at being told (like so many MSers before me who heard the same from their physicians), "You do not have multiple sclerosis".
After hearing this, I was relieved and excited to let everyone know the good news. Nothing I was told that day in the doctor's office made any sense, especially considering that the back of my body was still numb from the neck down.
I remember telling my co-workers, "Yay for no MS!" Now I giggle at the silly person I was then, ignoring the obvious. Fast forward half a year.
There I am on an exam table thinking about the abnormal assessments of my trauma and stroke patients over the past 15 years as a critical care nurse. Namely, the weird eye movements and fanning toes of the most severely injured. Except now it was not my patient's, those were my eyes and my toes! The entire visit was surreal and nauseating.
It was as if it could not possibly be my exam, because the person on the table was much worse than I could possibly be. After shining a light in my eyes, my new neurologist said, "Oh yes! You've had MS for a while!" I wanted to vomit as she reproduced my babinski reflex for the observing intern.
Moments of anger
I had viewed the lesions on my MRIs, read the final reports, personally experienced a variety of weird multiple sclerosis symptoms, but it would be those toes that finally made it all real for me. She told me, "You have probably had several episodes where you did whatever you had to, to push through it".
Wow, she had me dead on! Then I became angry. In the six months between "You do not have MS" and "You've had MS for a while", I suffered partial but permanent vision loss in one eye.
I wondered if the damage could have been prevented, or if the nasty active lesion in my frontal lobe would have even existed, had I not been misdiagnosed to begin with.
What hope does a normal person have in this system, if a nurse can not get quality care at her own hospital? Could a round of steroids have prevented the three months of L'hermittes I lived with?
Was it my lack of classical presentation or my previous physician's lack of expertise that delayed my care? Questions like these would greet me when I woke up and infiltrate happy thoughts during the day when I least expected it. I recognized that this thinking was unhealthy, but I was not certain how to change the background noise in my head from frustration to peace.
The possible futures
I knew I had great obstacles in my future to avoid or overcome, for I had cared for patients suffering from the end-stage of multiple sclerosis (and I am not referring to having to use a wheelchair, which the whole world seems to be freaked out about).
I no longer wanted to be my own road block to recovery by generating a daily dose of anger. I tried to reason with myself that the answers to my questions would do nothing to improve my health and that the rabbit hole I kept jumping in was a huge waste of energy!
'During those early times, I tried remembering the loving recommendation of friends and family, chanting it silently to myself, "Take care of yourself". Yes, self, let's do that! Let's take care of us!'
How can I be the patient?
HOW? My whole world had been about taking care of others, of ridiculously sick people, and the only time I did something "for me" was on my birthday.
The health promoting behaviors for the average person would not be enough for me, since now my brain had a roommate with something like a binge drinking problem and bad attitude.
Hours of reading medical texts and journals yielded little in the ways of how to take care of myself from day to day. Internet search results were full of wild claims, cures, and MS lifestyle plans based on the latest regurgitated nonsense health fads.
Blogs and forums were so saturated with negativity, that it was hard to find pearls of wisdom from other people with multiple sclerosis without feeling utterly miserable. I was skeptical when I pre-ordered the OMS Recovery Program book because I wasn't sure how it was going to help me or if there would be anything in it that I had not discovered already.
I was able to read the introduction on my e-reader, and it was so good, that I checked the mail every day to see if the book had been released early! There have been too many benefits for me from the program and community to list at this point; except for gratitude.
Unexpectedly in those pages, my anger and frustration turned into gratitude and peace. I appreciated the solid science and research behind the advice, and once I put it into action, it all made sense.
From frustration to peace
Moreover, it gave me peace through empowerment by knowing I did seven things today to improve my odds of relapse, and only one of those was by injecting a syringe of fire juice into my leg. I became grateful.
First thing in the morning I take a moment to be thankful for whatever is working properly. I do this again before I sleep, although there's usually less of me functioning by then.
During the day I find myself appreciating random things; such as the floor not being liquid, achieving another healthy day since my last ER visit, being able to easily read my patient's chart, or a rare lunch break outside in the glorious sunshine!
I practice gratitude every day for my massive, amazing support system. I am thankful for living in this exciting time of DMD's and hope for better treatments and to OMS for explaining how to take care of myself. I am grateful for being able to reprogram my emotional responses to experiences that once made me angry or made me want to vomit, and for being able to giggle at the silly person I use to be. Now I just smile. A lot.