Life with MS in five words?
“You never wake up alone.”
In the first five minutes of waking up, facial pain pulls my left cheek west, while my eye wants to move north, and my scalp just seems oblivious to any sensation at all.
Fantastic! Just the way I want to feel on any given day!
Today, however, I want to feel as bad as possible. “Sure, of course I am interested in being a guinea pig for medical students in their mock exams. Needless to say, one can never have enough neurologists, especially in Ireland.”
A few hours later, after another phone call with the teaching department of my neurology hospital, I think “Full day? Of course, beam me up, Scotty. Anything for the cause. If I’m tired, I can always sleep. A hospital is filled with beds, and therefore a professional sleep-environment after all.”
One by one, about ten medical students passed by my examination room, as if they were my real neurologist already. I love that bit of drama they bring to their mock exams, they’re quite professional and each of them is a walking medical encyclopaedia. Me on the other hand? I am allowed to play my role as nicely or awfully as I can. Not a huge task, since I sometimes have both an angel and wicked witch on each shoulder, battling it out between each other. A funny sort of synergy.
But not that day. No.
Last Saturday I was just… me… No added sin or scandal, angel or witch, drama or down-played cool.
It was just… me, my illness and my wish to help students, so I replied to many, many questions about my symptoms.
“Acute, unrelenting, defeating and well… let’s just say that “taking a nap” always turns into hijacking my bed for a few hours instead of having just a short power-nap.”
“Erm… Forgetfulness… I even forget my own symptoms.”
“Headaches, unaware whether it is just a migraine, optic neuritis or facial pain fooling me around.”
“Any other symptoms, surgeries, illnesses?” I am asked.
“Do you have an hour, so I can fill you in?”
“No, I’m afraid not.”
Laughing. Absolutely essential when having students in front of me who are trying to find out which illness(es) I have. Breaks the ice each time, and makes them feel more relaxed.
“OK… No problem at all, you actually save my energy levels by me not having to tell.”
Laughing again. Optimism is key. See the good in every bad seed.
“Clinical presentation?” Neurological exams seem to go well, all ten of them. Finger-nose-finger searches; cerebellar or intention tremor back, but no biggie. Leg strength not that good, walking at a snail-pace-rate sometimes. Indifferent Babinski reflex one minute, pronounced the next.
“Ataxia” one of the students says. And then another one, and another one.
Hey, have you lads been comparing notes, or what?!
“Hyperreflex“ most of them say.
“Ooooh, bad ataxia, three steps in.”
“Hyperreflexia as strong as that of a 14 year old, but abnormal for a 40 year old.”
“Cerebral speech problem. Dysarthria.”
“Hey, go easy on me here!” I say, adding “Yes, I sometimes slur my words, but I don’t drink alcohol. At all.”
“Acquired ataxia. One foot in front of the other, right heel in front of big left toe, like cops ask you to walk if you behave a bit funny.”
Wobbly. Wob-be-ly-oooooh! Three steps and I tumble left or right. Not OK.
“Autonomic Dysreflexia is hyperreflexia.”
OK, yes, thank you. Nearly kicked a couple of students in their chin when their mighty hammer hit my knee. Don’t blame me, now though, I hardly ever smack my own knees with a hammer at home, it doesn’t seem like a very healthy thing to do, n’est-ce pas?
What do you mean my “leg reflexes are as hyper as those of a fourteen year old, but abnormal for someone my age to have?” I add, “I should be the next Number 10 in Irish rugby, or a place kicker in the NFL. A boot to match all the MS silliness in my brain.”
“You’re so optimistic, you have an attitude that will help you in the future.”
“Why thank you, and you are very intelligent. Want to be my future neurologist?”
Belly-shaking laughing now.
Day over. Mightily tired, but feeling good inside. Helping students take a peek in what neurology is, feels as if I’m at least a tiny part of the very big question they will have to ask themselves further down the line. Will they pursue a specialisation in neurology, or not?
Either way, my purpose is fulfilled. They learned about trigeminal neuralgia, an uncommon symptom causing my face to hurt in an excruciatingly fashion. I learned about different types of ataxia.
MS itself? You can call out new symptoms, or upgrade those that went away and came back with a vengeance. You’re not getting me, MS, because the future of neurology in Ireland is looking better and better as time goes on.
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