Some days I feel like a half-baked Cinderella. There’s some promise at 8 am, but by 10 am my fairy tale book is closed until further notice. In the background, that all-important Cinderella clock keeps ticking forward. My body is in a rut: sleeping, eating, exercising, resting, eating, sleeping and back again.
And that Cinderella shoe?
Taken by someone else altogether.
In other words, and very much like a psychologically broken record, I keep finding out that I am 100% present, but physically I am a goner.
Last weekend I attended a two-day MS conference in Dublin organised by our National MS Society (the one I write for). From listening and talking to healthcare professionals on day one, it dawned on me once again that I had been feeling rather… ‘uncinderellish’ for some time now. Sitting right next to a large loudspeaker that suddenly blew all dust from my ears and added instant facial pain to my being, only confirmed my non-Cinderella status.
Also, about three weeks ago, I somehow created a rather bizarre night-time ritual. Because MS has a way of waking me up at least 3 or 4 times every night because of neuropathic pain, I picked up a half-asleep tendency to turn on my television without in fact staying awake to watch programs.
I simply continue sleeping.
Or with pain medication induced nightmares.
My bed-routine reads like a horror story at times.
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 by flipping channels to CNN, 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.
As if MS tiredness is just like normal tiredness.
Please do not think that your after-work-tiredness is anything like MS fatigue. Oh, please do not even attempt to.
I can assure you, MS fatigue is most definitely in a category 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. Its grey blubbery mass thought about that Greek tragedy I was supposed to see in the theatre last night, only, I fell asleep and instead had a rather funny interpretation of that same tragedy.
Oedipus and Sophocles would wonder about my sanity were they to interpret that creative achievement. Wisdom obviously lacking on my side, they would ban me to some far away island to live out my days in solitude like happened to so many other Roman and Greek contemporaries.
Although always lighthearted, the last few weeks have been anything but. This week alone there were several events I missed because of above mentioned excessive tiredness. Rain in Ireland, blood on the moon, water on Mars and my failed half-day-attendance-slash-reading at the Irish MS Society’s conference went up in snoring smoke. Thankfully a great friend read my piece (THANK YOU JJ!), and with some carefully applied facial pain medication, I managed to grab the tail end of the conference. As a perfectionist, those moments are things you want to personally enjoy and experience though, n’est-ce pas?
Perseverance is, therefore, something I aspire to achieve each day, yet the only determination that shone through the last few weeks was how badly Cinderella’s fine stature eventually broke.
Flu interlaced with facial pain and funny bedtime tendencies were plentiful and showed tenacity where it was not wanted. No glamour involved, no excitement aside from the moments when I tried sleeping it all away or from trying to stay 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’.
In October 2002, in true fairytale style, I moved to Ireland. In October 2015, still in Ireland, still quiet yet sociable and still connected to people who have my back and who bring possibilities I dare not even express yet. My body now works only half at times, and has on occasion dipped below 30%. Although impaired by visible marks on MRI scans, my brain doesn’t need another to think, and unconsciously deviating from the norm still results in having an alternative mind. And again, I’m happy with whom I eventually became.
I may spend a lot of time asleep, but the little princess inside me hasn’t stopped dreaming yet.
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2015. 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.