I was asked recently during an interview (see how I slip that in?) if I will write about my down days too, the days when MS succeeds in beating me. If I will tell you when I’m having a particularly crappy day full of exhaustion, stress, frustration, anger even! Or will I always portray the upbeat, resilient and hopefully a few of the funnier stories from my life with MS? My answer was yes, that’s what I set out to do, no one wants to read about the doom and gloom of life from a moany-pants!
This got me thinking. Of course living with Multiple Sclerosis is not a bed of roses! More like a bed of dandelines and nettles. Most days I choose to see the roses, sometimes even a field of sunflowers. There are days where I stumble barefoot through the nettles though. Perhaps I’m misrepresenting life with MS. I am a positive person by nature and I tend to mainly focus on more upbeat or funnier events.
As I said many blog posts ago, blogging is great therapy! I don’t publish everything I write (be thankful for that!) I go back, tweak, cut and paste into a different article, delete etc. Below is a post I wrote during one of my nettle days a few weeks ago, but decided against publishing to my blog. Have a tube of antihistamine cream ready for to calm the stinging bumps and be sure to play the song for the full multisensory experience.
Despite all my rage.
Am I still just a rat in a cage? I am indeed just a rat in a cage. I am Claire’s nervous system; a rat, a dysfunctional rat. Her body is my cage, a glorious cage (Claire’s edit).
My rage is caused by weakness. My rage is caused by frustration. My rage is caused by secret destroyers, silently attacking me.
My story needs a soundtrack. A song I know Claire would approve of. Bullet with Butterfly Wings by The Smashing Pumpkins. For full effect I suggest you play https://www.youtube.com/watch?v=8-r-V0uK4u0 at full volume while reading this. To share my anger, to wake up your senses and lastly to enjoy a great song!
the world is a vampire, sent to drain
secret destroyers, hold you up to the flames
and what do i get, for my pain
betrayed desires, and a piece of the game
even though i know-i suppose i’ll show
all my cool and cold-like old job
In my world I am being drained of stability. I am trapped in ‘malfunction mode’. I am devastated at how my battle scars affect her. Claire nonchalantly turns from her cooker towards her sink, assuming that her left leg will actually move like she tells it to. Oh no it won’t! Claire (stumbling slightly) shouts “oh yes it will”.
I am saddened that my ‘malfunction mode’ causes her to occasionally loose her balance. It angers me that her finer motor skills are sometimes affected; resulting in her handwriting being a barely legible scrawl or taking a ridiculously long time to tie her shoe laces.
Unfortunately even though I’m operating in ‘malfunction mode’, she definitely feels it when she slices her knuckle on an empty tin of chickpeas as she fills the recycle bin! My nerve endings work fine when she stubs her toe or steps on a Lego brick.
What I can’t manipulate from within my cage is Claire’s spirit which persistently resists my control. That leaves a bitter taste of resentment, something I can’t dictate. Her spirit firmly elbows me off my power trip. Who am I kidding? I have become so accustomed to controlling her body, my cage, it has ceased to sadden me, I have become a control freak. My rage and frustrations extend beyond the affects my ‘malfunction mode’ have on her to the realisation that no matter what I do, I can’t control her fighting and resilient attitude.
She raises her two fingers to MS, not in the aggressive manner you would expect (and I deserve), she is making peace with me, her rat inside her cage. She has freedom. She has the ability to mentally escape this cage.
Despite all my rage, I am still just a rat in a cage.