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 stress despite 50+ symptoms associated with MS, 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 severe fatigue and intense facial pain called trigeminal neuralgia, so what you will read below is more or less just a slight blip on the radar when compared to TN.

So, let’s get the ball rolling. What if I told you that:

  • Walking on a staircase can be a bit of an E=mc2 moment. Suddenly my knowledge of how to walk up or down a staircase vanishes, leaving me staring at it with big, wide eyes. 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 I can’t remember which motion takes preference, if at all. Or are they for decorative reasons only?
  • When I talk, I easily forget what I just said after just five words. I lose the pitch of a story, begin a joke at the end of the pun or forget family and friend memories. I would call forgetting my “Stephen Hawking moments!” as I really am lost in a black hole.
  • Despite having Uhthoff-related symptoms when being outdoors in 17°C temperatures or higher, sometimes a duvet mixed with a heating blanket doesn’t make me feel warm. A hot shower does help to a certain degree but when I get out of the shower, Uhthoff’s slaps me right in my face. I feel very weak; have tremors all over my body and need to lie down for about 45 minutes before I’m back to my old(ish) self.
  • Cutting food, sowing, knitting, doing any kind of small finger/hand movements often brings on intention tremors in my hands.
  • When I forget to take my medication, my legs and arms wake up from their tempered presence and go into a vengeful rage; my head is up in arms and my physical nerves, muscles and skin on my face feel like they’re slowly ripped from my skull.
  • Speaking of facial pain, just imagine having excruciating, shock-like stabbing pain in your ear, eye or cheek brought on by a cold whiff of air, brushing teeth, and loud noises, or simply by smiling. When I don’t smile, or when I stop talking, this is why. I would be incredibly happy if you would remember this instead of asking me who threw me under the bus this time, or worse, when you get angry because I have to cancel appointments at the last minute. Please do not presume I am truly committed to pain in sensationalist ways. I did not do this to myself, nor do I choose being in terrifyingly awful pain because I want to. Sadly, trigeminal neuralgia doesn’t do things by halves. The only “good thing” of trigeminal pain is the fact that my forehead is frozen, and that I cannot frown. One side of my face feels stiff, making speaking difficult to do.
  • Hot or spicy food? No can do. Don’t let me drink my coffee in a hurry. Same for spicy food.
  • You might know Vertigo as a U2 song, but MS-related vertigo means that the room is spinning around you, or that the floor seems to move upward or downward. Test yourself by sitting down and closing your eyes. When nothing happens: fabulous. When the room starts behaving funny, you better keep your eyes open.
  • Dark bedroom. Black sunglasses. No reading. No writing. Fairy lights behind me all day to make sure I don’t redecorate my bedroom by accident when I step out of bed. 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 in my hands and feet. 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. The waterworks refused. Ten minutes later on the way to the bus stop, “Urgh, I need to go.” Five-minute bus ride to my destination, final dash to the bathroom in Usain Bolt style. Kept the batroom company for ten minutes… “Christ, should’ve brought a 500-page book.”

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


  1. Pingback: What we refuse to discuss | Ireland, Multiple Sclerosis & Me

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