You’ve probably been there before.
You say to yourself… “I will absolutely, unequivocally, no-doubt-about-it stay under the duvet to get rid of a bad ear infection, facial pain, unrelentless fatigue and a bout of the flu.”
Sometimes you also think, “I suppose everyone has a point when they say I have to listen to my body a little bit more.”
But, shortly after you’re all cosy under your duvet and put on another rerun of documentaries, Suits, Homeland or Criminal Minds, you think, “Mmm… perhaps I should do some vacuuming, cleaning, grocery shopping, laundry and while I’m busy, write a book.” The fact that you sent yourself to bed for a very legitimate reason suddenly doesn’t count anymore.
In other words, you just became a member of the throngs who forgot how to be sick. In so doing, you know you want to avoid becoming a broken record, but you realise you already are.
That’s me. Sometimes I forget how to be sick. I’m impatient as a patient, and as someone with a chronic illness, that sounds rather kooky, if not nonsensical. I am a broken record that, as soon as it enters medical buildings of any kind – GP office, hospital waiting rooms, dentist, whichever…
Bang! That scratched, wavy broken record?
Is perfectly fine!
During neurological check-ups, I try to steady my finger-nose-doctor-finger (or was it also nose?) movements so linear as if planet Earth’s axial rotation depends on it. Other neurological tests performed with the utmost care.
Not a wobble or scratch on that record. At all.
Despite several MRI scans, lumbar punctures and neurologists proving its existence in my brain, I sometimes perceive MS as something that happens in other people’s grey cells.
Chronic, incurable, degenerative illness, Willeke?
Do I have to?
The worst thing of all, this behaviour did not start post-MS-diagnosis. It was present years before MS histrionics entered my kingdom.
Checked myself out of hospital after abdominal surgery. Twice.
Checked myself out of hospital after severe chest infection.
And more. “Ah… please doctor, I need my own bed to recover (because it truly is the only place I recover, and it so happens to be the best bed I have ever slept in), plus the noise and the lights on the wards keep me awake all night (noise + lights = one cranky Willeke in the morning).”
For some yet scientifically unidentified reason, as soon as I find myself in medical facilities my unconscious mind starts imprinting my conscious mind with the notion that I am just better than fine, and I think I have no reason being in a hospital at all.
Despite a counselling diploma with merit and other psychological teachings, I refuse to sit down with myself and stomp some decent therapy time in that rebellious mind. In short, I simply put it down to some sort of psychological fight or flight deal, just so I can get out of there in less than five minutes.
The fact that in the past, I needed abdominal surgery for an important reason, or that, for the past decade or so I am dealing with what could be called a train wreck of an illness, I insist on finishing my hospital stays in more decent surroundings. And with decent, I mean home, and more accurately, my bedroom.
Also, the fact that physically I am crumbling under a lot of neuropathic pain, can’t frown my forehead into cute wrinkles, have no feeling on the top of my scalp, have constant bees in my ears of tinnitus, stabbing facial pain and intense fatigue, is something I refuse to show anyone carrying a medical degree.
It’s a survival instinct of sorts. After all, Charles Darwin said, ‘It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is most adaptable to change.’
I change weakness into ‘pretending to be just fine’, or in more agreeable words, I change weakness in ‘surviving on my terms’.
In front of friends.
Basically… almost everybody.
Last month, right before I saw my neurologist a screaming baby in the waiting room set off stabbing facial pains again. Within a split second, a sharp lightning bolt hit my face and I physically fell apart inside, trigeminal neuralgia sending shooting pain in and out of my left eye, ear and face.
I had to get out of that hospital.
ASAP. Not now, but ten minutes ago. Preferably before the screaming baby was wheeled in.
Still, I sat out my time in the waiting room, and when I was called in, I was ‘fine’ in front of my neurologist. Talking about books. Libraries. Writing. The best darn neurological check-up I ever had.
Saw my own brain on my last MRI scan. Looked funky. A good few lesions, but sure, what’s one lesion more or less once they’re inside your brain already anyway?
“Just take a few more tablets a day for your trigeminal pain, and next year you’ll get another MRI to see how things are going,” said the book-loving neurologist. At this stage, my face was screaming of pain. More talking about books. How he didn’t much people who love books as much as we do. Aww! Stabbing pain! Oh yes, I almost asked if he would marry me as a joke, but thankfully my face prevented me from doing so.
Also, the knowledge that my bed was two bus rides of about 1.5h away was a very real and heavy weight on my shoulders. I needed to be back in that bed urgently, as every footstep caused shooting pain above and right under my eye, and every other step sent fireworks through my eye.
Still… I tried to smile when I ran into one of the MS ward nurses, and tried to talk with another neurologist. By now, I talked gibberish and uttered non-verbal sounds that resembled ‘bed’, ‘home’ and ‘urgently’.
Upon coming home, I skipped my usual post-hospital-visit-cleansing, undressed, took my evening medication and went straight to bed. Like the MasterCard ads, it was “priceless”.
The few people with trigeminal neuralgia know exactly how painful an affliction it is, and when I’m with them I feel no need to show Miss Rebellious. I presume, or rather know for a fact, that people without TN thankfully have absolutely no idea how utterly severe its pain can be. It being called the ‘suicide disease’ in a more colloquial manner speaks for itself.
It does make me wonder though if there will ever be a doctor – neurologist or otherwise – who will one day say, “Willeke, come on, get real. No pretending, just tell me what and how you really feel.”
My late dad told me a few times I was good at hiding that pain. He was right. What he was also right about was that I shouldn’t hide the real MS-me, and real MS-related pain.
Ah sure… Darwin said…
Willeke is a disability awareness advocate and originator of Ireland, Multiple Sclerosis & Me. She actively writes for other people’s blogs as well as for the MS Society of Ireland blog, and in doing so, raise awareness about life with multiple sclerosis at home and abroad. Connect with her on Twitter and Facebook. Also check her new blog Kick-Ass Ireland.
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.