Yesterday I felt like a slug, like I was hit by a speeding train, waking up feeling like I hadn’t slept in a week, barely enough energy to actually or what I would consider being looking after myself. Unable to manage anything, it was a day spent trying so hard to just accomplish what would or should or used to be so something so simple like a walk to the doctor’s office, became a monumentus task, leaving me even more exhausted, humm if that’s even possible.
Today, after struggling through the day yesterday, and believe me it was a struggle, I woke to feel refreshed, bright and alert, like somehow my waking feeling like I hadn’t slept for a week yesterday, I was given that today. It’s so exciting to wake up and feel like you can almost take on the world today. What a feeling! It’s like a “joy to the world” kind of thing. To be able to manage a shower, start a loaf of bread, actually get dressed, and do makeup, it’s something so big, yet most don’t even think about it, it’s just part of the daily routine.
But here’s the thing, learning to live in this newfound way, never knowing from day to day, what you may be able to manage, what your energy will be, and or how long it will last. Then there is the cognitive piece, day to day, it changes along with your overall energy and abilities. You never know how long the battery charge will stay in the green, and some days like yesterday the full battery pack, physical and cognitively is in the red, and no matter what you do, you just can’t get it into the green.
It is these things that make this illness so challenging and so hard for others to understand. It also causes a lot of frustrations for those of us trying to navigate through it and get some understanding from those around us. For me, that’s not as difficult as for some, because I live alone, but that creates a whole host of other challenges, for on those days when the battery is empty, trying to manage a meal, a cup of coffee, become unmanageable, and meals well forget that, whatever is sitting there, that’s what you have, or on many of those days, the energy is so drained that even finding the energy to have that meal is often too much.
So on days like today, managing to be showered, ready for the day by 1030, is like this huge gift. I always think about how fortunate I am, for this illness although causes a great many struggles, and looking down the road to the late stages is terrifying, being able to fumble and bumble my way through the days at this stage, is so much better than what many face each day. I don’t have to look very far around to all those I know to see what many live through and deal with, and that doesn’t mean mine is any less it just means I can keep myself focused on my good days, on my good moments, and on those bad days remember what others are dealing with and remind myself, it’s not that bad, yup it’s not that bad…not yet.
Chrissy's Journey 