The truth about Cinderella
Some days I go through life like a half-baked version of Cinderella. There’s promise at 8 AM, but by 11 AM my fairytale book is closed until further notice. In the background, that all-important clock keeps ticking forward, but my body is in a rut: sleeping, eating, exercising, resting, more eating, more sleeping and back again. And that Cinderella shoe? Taken by someone else altogether. Very much like the 11 AM dip in your energy levels, mine resembles a psychologically broken record: I keep finding out I am 100% present, but physically I’m not all there.
While I was sleeping…
“If asked if I want to feel and be the ‘me’ before my diagnosis, I would reply this, “Of course I wish to be that person again, only, I simply cannot remember what ‘normal’ feels like.” Fatigue significantly interfered with daily life very early on in my road to diagnosis and was one of the reasons why, eventually, I was forced to retire four and a half years later."
How (not to) be sick!
That's me. I forget how to be sick. 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.
Are you Cinderella yet?
"Seeing the world with fresh eyes every morning is something other people do. I try to get my innate sense of curiosity and wonder going when I wake up, but my enthusiasm only reaches as far as, “Oh look, both my eyes are open!” I re-evaluated my night-time activities, so, as those dubious sleep and pretend-to-be-awake-games only lead to more excessive MS fatigue."
Detailed Trigeminal Neuralgia info
Types ° Typical TN ° Atypical TN ° Pre-TN ° Multiple-sclerosis-related TN ° Secondary TN ° Post-traumatic TN (trigeminal neuropathy) ° Failed TN
Medical terminology?
"Because fatigue does not show a relationship with how many plaques your MRI shows, it is often hard to gauge, even though it does predict later brain atrophy in the posterior parietal cortical lobes. Also, MS fatigue comes in two different varieties, the primary and secondary type of fatigue. During functional MRI scans for physical and cognitive tasks, it was clear that inefficient reorganization of a damaged central nervous system took place. MS fatigue is also a medical fact, so, and is associated with other neurological symptoms."
Five-year plan
Bad tidings always happen when you least expect it. Your plans for tonight, next week or the following year get punched right in the stomach and you have to regroup. Not only does rearranging your life involve more people than just yourself; your family, friends and colleagues need to find out where you and your plans will eventually fit in. Parameters of life get reset and the future-plan question during your last job interview pops back in your mind: “Where do you see yourself in five years from now?” I truthfully replied that I had aspirations of climbing the corporate ladder and that I wanted to combine this with studying. This was the interview that would lead me to live in Ireland and I ultimately worked in the company for…