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 resemble a psychologically broken record: I keep finding out I am 100% present, but physically I’m not all there.
Last Thursday, I travelled to the other side of Ireland to attend our national MS Society’s annual conference on Friday and Saturday. While listening to healthcare professionals on day one, it dawned on me once again that all was not well.
Despite the happy reunion with friends and lots of talking, followed by interesting lectures about MS on Friday, trigeminal neuralgia returned to test my limits. Before it turned into tormenting shock-like nerve pain in and around my eye and temple, I slipped away and tried to sleep off the worst of it.
But, there’s not enough sleep involved when your face serves as a neuropathic tennis court where aces, volleys and drop shots try to baffle you.
Hibernation arrived quickly – it had been two long days after all. Missing the gala dinner on Friday evening was the victim, as I slept through phone calls and text messages telling me to hurry up. Around 2 AM, my non-Cinderella status was officially established when shooting pain had changed into a perpetual, burning, rubbery sensation that made paying attention equally difficult.
As with other events this year, I had to cut short my presence to attend to the nerve pain and the absence of quality sleep. Two days after coming home, I am still refining my embrace with my duvet.
Sadly, TN knows how to curtail events in people’s lives.
And, TN’s way of sleeping is begging for consideration while playing hard to get.
The last 8-hours of undisturbed sleep I once had, seems like a lifetime away.
Watching the world with fresh eyes every morning is something other people do. I try to wake up my inherent sense of curiosity and wonder by watching the headlines on CNN, but my physical enthusiasm only reaches as far as, “Oh look, both my eyes are open!”
I constantly re-assess midnight activities, as dubious sleep and pretend-to-be-alive-games only contribute to further excessive MS fatigue.
As if MS tiredness is just plain fatigue.
Do not assume that after-office-tiredness is anything like MS fatigue. Please, do not even try.
Let me ensure you, MS fatigue is unequivocally in a class of its own. Call it the Encyclopædia Britannica among that vast, enormous, gigantic array of Encyclopædia.
This morning my passive Cinderella brain reflected on its next move and fell asleep again. After my yearly flu vaccination a few hours later, I happily found my way to my bedroom once again.
Although always lighthearted, it hasn’t been an easy year so far. As a perfectionist, it’s hard giving in to physical demands that take away moments of joy, n’est-ce pas?
Perseverance is, therefore, something I aspire to achieve each day, yet the only determination that shone through this year was how badly Cinderella’s fine stature finally broke.
Facial pain showed tenacity where it was not wanted. No glamour involved, no excitement aside from the moments when I tried sleeping it all away or tried staying up and half-running for a couple of hours. Being chronically ill isn’t as straightforward as people make out to be.
But, life’s about being a better version of yourself than you were yesterday, and as one word turns into an article, a silent breath turns into an ‘I’m happy with whom I eventually became’.
Although impaired by visible marks on MRI scans, my brain doesn’t need another to think, and I remain fiercely independent.
I may spend a lot of time asleep, but the little princess inside me hasn’t stopped dreaming yet.
For more on different kinds of sleep disorders associated with MS, please visit Tuck’s web page.
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. 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.