The MS Diagnosis – My Story

The MS Diagnosis – My Story

This is not an easy post for me to write…mostly because there are still days that I refuse to own this diagnosis.  Sometimes it feels like a bad dream and that I must be living someone else’s life;  it’s been a pretty bitter pill to swallow and it had all but stopped me in my tracks for a while.  There are still a few dark days, days that I mope around and feel sorry for myself and wail “Why me!” despite all attempts to stay positive and motivated.  It’s this personal journey that prompted me to change tack with my blogging and to start this one.

I was originally the voice of but it really lacked something:  authenticity.  It was like I was on auto-pilot!  I was hiding behind that blog because it meant I didn’t have to focus on me or this ‘thing’ that kept knocking me on my ass at every opportunity.  It got to the point where I didn’t feel like posting anything or engaging with anyone.  Everything felt like hard work and I just didn’t have the energy anymore.

The starting point of this tumultuous journey was the day of my diagnosis – 2 days after my 36th birthday and the following is an excerpt of the diary entry I wrote of that day:

“I stare down at my hands, clasped in my lap with my fingers knitted together.  A black wave moves across my vision, blocking out everything but the neurologist’s impassive face as I hear myself ask:  “Are you sure?”.  

There’s silence in the room but, in my own head, there is a loud rushing sound and I feel the blood drain from my face.  The rushing sound becomes almost comforting as it fills the eerie silence that hangs in the air…a deafening silence, a frightening silence, a pregnant silence.

He gives a curt nod, picks up his pen and jots down a few more notes before giving me a final “Yes!”.  He slightly adjusts his cloak of professionalism as he wraps it more tightly around his shoulders.  Anything to remove him from something as basely human as tears of distress.

A single tear rolls slowly down my cheek and gently falls on my still-folded hands.  Is that it?  One sentence and suddenly I become a diagnosis filled with symptoms;  a sentence delivered with the efficiency and tact of a shop assistant giving you your change.

“Please make an appointment for three months from now so that we can begin treatment,” he says dismissively.

The tears are now falling freely down my face.  I feel numb.  I stand up slowly, only but for the steadying arm of hubby I don’t collapse into a heap of shock at the foot of the messenger.  

I walked mechanically out of the consulting room and back to the car park.  It’s only once I’m sitting in the safety of the car that I begin to feel myself become unhinged.  My hands come up and I bury my face in them just in time to hide my pitiful tears from hubby who has yet to say anything.  My whole body begins to shake and huge, heaving sobs ache in my throat.

Hubby folds me tightly in his arms and we sit like that for the best part of an hour.  Totally lost, totally out of control and totally broken – both of us!”

In the post “You are Strong Enough“, I included this diary entry but I also wrote about how I grieved the loss of my old self and how denial and anger became my close companions for many weeks. It’s not easy being told you have an illness that has no intention of ever going away…in fact, its plan is to stick around and taunt you for the rest of your life.

I’m trying to own Multiple Sclerosis now, make it mine, but on my terms.  I’ve come a long way since the original diagnosis in 2010 but this is a journey;  there will be good days (there are always good days!) and there will be bad days but through it all, I’ll be strong knowing that there are others out there fighting the good fight with me!

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