You know what it’s like when you’re watching a video clip on your computer and the voices are just a little bit out of synchronization with the pictures? Yeah, that’s what multiple sclerosis (MS) has felt like to me these past few weeks.
It’s as if I’m the smallest kid in the marching band carrying the largest cymbals — with one shoe untied and slightly out of step. I just can’t seem to match phase with the world around me.
The dogs need a walk, but I need a nap.
When I have enough energy to do a bit of weeding in the garden, the rain falls.
I have enough energy to cook something, but not enough to go to the market for ingredients.
My energy levels are up, so I could try to do something, but my pain levels are also up, making it all but impossible.
The heart may have amorous inclinations, but the body sees the bed for a whole other purpose.
I’m so tired I can do nothing but lie down, but my brain is so active trying to find undamaged pathways that I am unable to sleep.
Our weekly blog is due, but my fingers won’t cooperate to write the damned thing.
The summer sun is shining — and I’m on medication that makes me sensitive to the light.
A good day gives me a bit of energy to do a few extra things, and I spend that energy doing the required tasks that have gone undone for days.
I crave some human company, but I can’t string four words together to form a sentence, let alone a full conversation.
My head is in the game; my body is still in the clubhouse.
Just like trying to follow along with a video that’s a second or two off from the sound, I find it unnerving, difficult, and rather exhausting to keep up with the translation in real life. If feels like I should “reboot” myself to get back in sync, but that’s not how MS works.
I share these observations and the difficult times because I know you get it, and I also know that when I’m honest with myself and with you, our Life with MS blog community, we are all more at ease in sharing the good and the bad.
It’s not always good … but it’s not always bad, either.
So, we’ve got that going for us.
Wishing you and your family the best of health.
Cheers,
Trevis
My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis.
Illustration: Roy Scott/Getty Images
