Joie de vivre

Christmas, a year ago, feeling healthy and fabulous
…for 20 minutes, LOL.

When you have an invisible illness such as ME/CFIDS, it is easy to temporarily loose your inner flame. That little fire that burns inside of you, your mojo, your energy, your zest for life, that  which brings color to the world. That ‘joie de vivre,’ the French joy of living. It was there for me on autopilot mode my whole life. Until I got sick, and it was swallowed up… oops there it went, gone.  Most of  my energy went towards basically surviving from one minute to the next. Even digesting foods, comprehending speech, or changing clothing took more energy than I had, so there was  not much energy left for a mojo.

One faithful aspect of ME/CFIDS for me is that I get occasional windows of time where I feel almost normal. This has held true over the last four years, even if that window lasted only twenty minutes in a 24 hour period. I knew it would always come. And when it did, I would always greet it with so much relief and joy! Compared to the various cycles of symptoms before and after these little breaks, I actually feel comparatively excellent, almost euphoric. Anyone else living in my skin during my ‘good moments’ would probably feel cranky and perhaps even a bit alarmed at how off they would feel, but for me, these moments are solid gold. Sometimes during a break like this, I would go immediately to find one of my favorite outfits, and I would take a photo of myself. Sometimes it’s a little black dress, such as above, other times it’s my shortest shorts and a tank top. Heck, let’s be honest. Sometimes I dig out my bathing suits and turn the radio to a station that makes me feel alive. Then I dance around and make videos of myself being ALIVE! Whatever it is I choose to wear during these breaks, I make sure it’s something I wore ONLY when I was healthy and was having fun, or haven’t worn yet but really love. Then weeks later when I would get too ill to move off the couch, I would look at the photos and remind myself that good times do exist still, that there was an undeniable spark in my expression. I have the proof right  in front of me.

 
I want to encourage any of my friends reading this with invisible illness: grab ahold of the good moments when they are there. Rev them up, squeeze as much joy and inspiration out of them as possible. Don’t feel guilty about it, either. Whenever you have the energy to indulge and make yourself feel amazing, go for it. Say yes to it. I’m learning how to do this, as well, so I’m not a guru or anything yet.
 
I know how easy it is to wake up two or three years into an illness with the same holey sweatshirt, jeans with frayed knees and pockets, and sneakers that you bought five years ago. If the energy is not there to think beyond your next meal, or surviving from one minute to the next, the clothing is not an issue in the scheme of things. It’s easy to forget, really, everything, even your name and age, so forgetting what you look like is really par for the course. But on those moments when your energy goes up and you remember what it’s like to shop online, or buy things for yourself, even if you don’t yet get out in public and no one really sees you except a house mate, or your pet, I say go for it.
 
 
 
 
 

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