A few weeks ago the MS society posted a question on their Instagram page that asked, since being diagnosed with Multiple Sclerosis have you had to redefined who you are and what you want out of life?
It didn’t happen right away. Immediately following my diagnosis and for the first probably 8 months, I vowed to not let a diagnosis redefine me. I refused to allow a diagnosis to be who I now was. Looking back it’s almost comical, for me and my story, because holy roller coaster of a first year batman. My first year with MS was a whirlwind of a ride. It set the course for what now has continued to be a wild roller coaster of the highest highs and lowest lows, plagued with unforeseen drops around every corner. Luckily I’ve learned to fasten my seat belt and use that grab bar since the first year 😉.
When you’re in your first year as a registered nurse, charge nurse, semi-real life functioning adult, trying to maneuver through life as a newly diagnosed chronic illness patient life is a little overwhelming. That’s a lot of new undiscovered territory, with not a lot of road maps and direction to go off of. I spent the better part of that first year fighting not the disease, but rather the diagnosis. My first instincts when things get hard, has always been to run. Ignorance is bliss, and this was my way of coping. I was convinced that if I worked 60+ hours a week, then I couldn’t be sick, because sick people don’t do that. I was compliant with medications only, I canceled and rescheduled doctors appointments regularly, convinced that if we weren’t talking about the problem, then it wasn’t there. If we weren’t obtaining MRIs then we couldn’t see progression, so all must be stable. This ridiculous game plan of mine lead to multiple hospitalizations and ultimately an over 4 month admission, where I underwent hours and hours of physical and occupational therapy, spent almost 6 months away from a job I loved and was unable to walk for most of. Spoiler alert: when you take a girl that lives life at 100mph and take away her independence and ability to walk, life comes to a screeching halt.
In an inpatient rehab hospital you spend 3 hours a day with physical and occupational therapy. That leaves 21 hours alone in your own head. It leaves no options for anything but redefining yourself. The first few weeks were hard. The shame, the defeat, the embarrassment that came with losing my independence; it still hurts to think back on. There were days and weeks I couldn’t look at myself in the mirror. I felt like a burden, I couldn’t look my family or closest friends in the eyes but I had never needed their love and grace more either. During this time I, thankfully relied on my faith immensely. I knew God didn’t bring me out into the waves to drown, and I knew there was a reason behind every single one. For once in my life I didn’t fight it, I allowed every wave of sorrow and defeat to crash over me, and I prayed for a reason and something meaningful to come out of each one. That’s when I truly redefined who I was, and what I wanted out of life. Consciously and subconsciously. By allowing myself to come face to face with reality, I was finally able to take the first step accepting who I now was.
Long story short this was the start of this blog, of realizing my journey could possibly help others or save them from the pain my mistakes had caused me. It’s what lead to me being able to stand here today and say yes I have Multiple Sclerosis, but it’s given me far more than it’s taken. Since being diagnosed I’ve realized just how special every day is, how magical independence is, how breathtakingly amazing every step is, how unbelievably blessed I am and just how amazing the people surrounding me are. It’s made me a better nurse, it’s taught me what empathy really is and has completely changed the way I view every patient encounter. It’s shown me what friendship, family and love are. My diagnosis has taught me that life is messy, it’s unpredictable and just when you begin to think you’ve got your bearings the next loop and twist appear and the roller coaster continues.
Have I had to ultimately give some things up since being diagnosed? Of course.
Was it easy? Absolutely not, it came with its own heartache, and somedays that heartache reappears and is just as fresh and raw as it was previously. But no matter what it is, a diagnosis, a marriage, a new job, life will always come with it’s fair share of disappointments, it always requires new plans, and revisions to current ones. Otherwise life would just be boring, and who likes boring? 😉
As cliche as it sounds, my diagnosis lead to me learning to let go of the pretty pink glitter filled imagine of what I thought my life should be, and allowed me to step into life as the person I feel called to be. Not every day is perfect, there are still days I struggle to let go of that image in my head, but those are the days life has a way of reminding you just how blessed and loved you are, and that my friends is breathtakingly glitterful.