What you might not be aware of

Building further upon my previous post, “What we refuse to discuss,” let’s open the “Surprise!” book of MS. Before you read any further though, I do want to say that I do not have below symptoms all at once, or on the same day. Some are more present than others, or less or more intense. Some happen once a week, others perhaps more.

You probably know by now that my main symptoms are still ridiculously severe fatigue and excruciating facial pain, so what you will find below is more or less just a slight blip on the radar in the scheme of things. Unless I fall off the staircase of course, which would be rather erm… well… just silly, n’est-ce pas?

So, what if I told you that:

  • Walking on a staircase can be a bit of an E=mc2 moment in my life, meaning I can’t remember what those things at the end of my legs are for. They look cute in my tall Dr Martens boots, but every so often, I do wonder about them. Do I lift, drop or kick them sideways or not, or are they for decorative reasons only?
  • When I talk, I forget what I just said after just five words. Or I lose the pitch of a story or forget (intense) family memories – the look on my mother’s face when I forgot I was my late brother’s witness at his church wedding said it all. Blank facial expressions change to an “Aha-moment” when I am served more details.
  • A duvet mixed with a heating blanket me doesn’t help me feel warm. “A hot shower?” you might ask. Bingo! Oh, it does make me feel warm. But when I get out of the shower, Uhthoff’s symptoms slap me right in my face. I suddenly feel very weak; I have tremors in my head, hands and legs and need to lie down for about 45 minutes before I’m back to my old(ish) self.
  • Cutting food, sewing, knitting, doing any kind of small finger/hand movements. “Yeah, yeah, she has the shakes… too much alcohol in her!” Good grief, please spare me! Non-alcohol drinker here! Intention tremors take over my hands, just can’t help it.
  • When I forget to take my medication, you want to be somewhere else after a few hours. Literally somewhere else. My legs and arms wake up from their tempered presence; my head is up in arms and the nerves, muscles and skin on my face is slowly ripped from my skull.
  • Speaking of facial pain, just imagine having excruciating, shock-like, painful stabbing in your ear, eye or cheek brought on by a cold whiff of air, brushing teeth, and loud noises or simply smiling. So, when I do not smile, or when I stop talking, you now know why. I would be incredibly happy if you would remember this instead of asking me who threw me under the bus this time. I am truly committed to pain in sensationalist ways, at least my face is. It doesn’t do things by halves. Little rebel me!
  • The only good thing of trigeminal pain is the fact that I cannot frown, meaning I am very Botox-like-wrinkle-free on my forehead. Oh sure, my face feels stiff, making speaking difficult to do, but they, I have a wrinkle-free forehead!
  • Hot or spicy food? No can do. Don’t let me drink my coffee in a hurry. No-no. Same for spicy food. “It is what it is,” Dr Phil would say. I say “I wished it was that simple!”
  • It’s not a U2 song called Vertigo, but spinning-room-around-me-vertigo. Test yourself by sitting down and close your eyes. When nothing happens: fabulous. When the room starts spinning around you, and the floor seems to go up and down when you’re on the loo, you had better keep your eyes open!
  • No reading. No writing. Dark bedroom. Black sunglasses. Fairy lights behind me all day to make sure I don’t redecorate my bedroom by accident when I step out of bed Fred Astaire-like. Peace. Quiet. Utter, utter, utter quiet. Sssshhhh… Yes, this is migraine in large quantities as well as qualities.
  • Fairly new in my cabinet of MS symptoms: pins and needles. My nana used to have a buttons, pins and needles cabinet, but mine is located inside my body. Not exactly where they should be so I will have to adapt to their presence.
  • I wished I were a man. Last week: on the loo, watching the ceiling, singing a song, willing the waterworks to take action.
    “Nope,” said the waterworks.
    Ten minutes later on the way to the bus stop… “Feck it, I need to go!”
    The five-minute bus ride to my destination, final dash to the loo in true Usain Bolt style. On the loo for ten minutes… “Christ, should’ve brought a 500-page book.”

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. Unauthorised 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.


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