Sleep and MS… It’s what’s (not) happening!
Imagine standing all dolled up at the front door, excited to go to the film you’ve been dying to see. That doesn’t do it for you? Replace ‘the film’ by ‘finally buying the boots you’ve been waiting for’ or by ‘rushing out to buy a new power tool’ to finally set up new furniture.
Why I should be a brainiac, but I’m not
It happened again. Just when I attempted to maximise my brain, it decided to take over and run the show. It’ll be fun, it said. But, it was so not pretty. Not even by a long mile. With so much physical pain and hence collected a fair amount of neurology-related knowledge due to life with MS, I should be a brainiac. Yet, I am not.
You will survive!
To this day, 13 years post-diagnosis, I am still prone to having conscious/unconscious battles. I am past the "woe is me" period that tried to knock me sideways at first, but I still have pacing issues that lay bare any ineffectiveness I attribute to myself.
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.
Do I have stupid written on my forehead?
Can you recall what life was like before this craziness started? Nope? Neither can I. There is a bit of mental derailing going on right now. Fatigue is back with a vengeance. I am so excellent in not sleeping well, that when I do, it’s a reason to organise a party, or rather, a pyjama gala. Sponsored by MS. And it’s undoubtedly impacting my thinking. No, seriously, having MS is not a simple task, job or status. It’s always there, in the background. Or in the limelight. In the shower. In bed.
Oh, snap!
"Also, because of the long, warm summer days, Uhthoff's Symptoms, also referred to as Phenomenon or heat sensitivity, means that I am rather slow in the upstairs department, which eventually lead to predicament B. My days are unquestionably not dull nor tranquil, so."
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."
